THe New exPeRIeNCe Of lImB lOSS

Transcription

THE New Experience of Limb Loss
Section 1 has been funded by educational grants from the following organizations, companies and individuals.
Advanced Prosthetics & Orthotics of America • Amputee Clinic, Inc. • College Park Industries • Endolite
Hanger Prosthetics & Orthotics, Inc. • Myrtle Beach Brace & Limb • Northwest Prosthetic & Orthotic Clinic
Orthotic & Prosthetic Assistance Fund, Inc. • Orthotic & Prosthetic Design, Inc. • Otto Bock HealthCare
Progressive Orthotic & Prosthetic Services, Inc. • Sunrise Medical
For more information on sponsors, see pages 129–130.
Life Without a Limb May Be Different,
But It Doesn’t Have to Be Worse
W
by Paddy Rossbach, RN, ACA President & CEO
When I was asked to write about what it is like to live without a limb,
I replied, “I’m not sure that I know the difference. What is it like living
with all of your limbs?”
You see, I lost part of my
leg when I was 6, and I
honestly don’t remember
having two. In fact, it took
the question of a patient
who had recently had an
amputation to make me
realize that I had a lot to
learn about the differPaddy Rossbach
ences between people
who are born with a limb difference or who lost
a limb at an early age and those who lose a limb
later in life.
She asked, “When you go home at night, get
undressed, and take off your prosthesis, don’t you
think you look awful?”
I was a little taken aback at her question. No one
had ever asked me such a thing so I just answered
quite truthfully, “I don’t know; I’ll go home and look.”
So I solemnly went home and looked. As I was
sitting on the floor looking at my one and a half
legs, I thought, “Do I look
awful?” Then I thought,
“No, I’ve always …,” and,
with a flash of understanding, I thought, “I’ve
always looked like this.
If I suddenly sprouted
a leg, foot and toes, that
would look peculiar to
me!”
I went back and
thanked her for teaching me a very valuable
lesson.
Of course, living with
the loss or absence of
a limb is different, but I
am a firm believer that the effect it has on our lives
depends less on the severity of the loss than on
how we deal with it.
Children born with a limb difference don’t miss
what they never had, but they probably wonder
what it would be like to be the same as their
friends. Unfortunately, they may also have to deal
with cruel teasing from other children at times.
Losing a limb is particularly difficult for teenagers. While they are in the midst of discovering
who and what they are, they are suddenly “different” – and not in a way they would choose to be.
Adults who lose a limb have their own set of
problems and are more likely to spend time in the
anger, denial and guilt phases of grief. The fact is
that some people are survivors by nature, while
others find it more difficult to cope with adversity.
All of us are, however, likely to benefit from some
kind of support.
The things people worry about fall into two main
categories: physical and emotional. Will I be able to
To support the ACA or to become a member, call 1-888/267-5669
wear a prosthesis if I decide to? Will I be
in a lot of pain? How long will it last? Will
I have to depend on others for the rest
of my life? Will I be able to function like I
did? Will I be able to keep my job, support
and care for my family, travel, go to school,
play sports? How will my children, life
partner, friends, and the general public
react to this different me? How will I feel
when I look at myself? Will I ever wear
shorts or short-sleeve shirts again?
These and many other thoughts go
through every new amputee’s mind. Some
answers will depend on the quality of
care and support you receive. We all do
better when our surgical and prosthetic
care and emotional and physical rehabilitation are performed or supported by
trained professionals who work together
as a team. But much depends on our own
determination to simply “get back and get
on.”
No matter how good our healthcare
providers are, nothing can take the place
of talking with an ACA-certified peer
visitor (PV). This is someone who has
recovered from a similar experience and
can, therefore, truly understand your challenges and fears. This is someone who
has been trained to listen and who can
provide appropriate educational materials and resource information to help you
through the recovery process. Spouses
can be peer visitors to other spouses, and
parents of children with limb differences
can be peer visitors to other parents. Peer
visitors can also serve as wonderful role
models.
Another way to benefit from interacting
with others living with limb loss is to join
a local support group. (See pages 32-38.)
Being a knowledgeable patient will
relieve much of your anxiety about the future, and being less anxious will promote
faster recovery. If you are going to use a
prosthesis, learn about different components and the fitting process, and discuss
things with your prosthetist. Learn how
to choose a prosthetist, what questions
to ask your healthcare providers, how to
find a peer visitor or support group, and
First Step * Volume 4
On October 17, 2005,
Sarah Reinertsen,
an Amputee Coalition
of America Board
member, became the
first female amputee to
complete the legendary Hawaiian Ironman
course, which is
widely considered
the toughest endurance competition in
the world. © 2005 Rich Cruse/richcruse.com
what your rights and responsibilities as
a patient are. Be knowledgeable about
your insurance coverage and what can
be done if it is inadequate. If you are not
going to wear a prosthesis, learn about
what other assistive devices can help you
maintain an independent, active lifestyle.
The answers to all of these questions can
be found at the ACA, and many of them
can be found in this publication.
Set small, achievable goals so that you
feel good about yourself when you reach
them. Try not to compare what you can
do now with what you could do before.
This is a new beginning. Just compare
where you are today with where you
were when you started this journey, and
feel good about your progress. This is
not easy. Recovery can take some time
so it is important to realize how far you
have come. You know what your ultimate
goal is, but you cannot just leap from the
bottom of a high flight of stairs to the top.
Reaching your goals is the same; you do it
one step at a time. (See pages 14-16.)
Although you may not believe it now,
many people who live with the loss or
absence of a limb believe that their lives
have been enriched by the experience.
Since losing a limb, many have gone on
to achieve things they would never have
thought of doing. Young people, in particular, become superb athletes, even competing against other athletes without a
disability. (See photo and caption above.)
Others find that just facing the challenge
and succeeding has strengthened them
and given them a whole new set of skills.
Whatever your circumstances, please
know that the ACA is here for you to “empower you through education, support
and advocacy.” Just reach out to us, and
we will help you in any way we can.
Amputation Surgery and Afterward
What Should I Expect?
F
First Step asked several highly qualified professionals and amputees to
answer a number of questions about amputation surgery and pain to
give prospective and new amputees a better idea of what to expect
during their surgery and afterward. Following is a list of the contributors
and their qualifications.
Contributors
Douglas G. Smith, MD, is ACA’s
medical director, an orthopedic
surgeon, the director of the
Prosthetic Research Study (PRS),
and an associate professor at the
University of Washington, School of Medicine,
Department of Orthopaedics, Harborview
Medical Center.
Christina Skoski, MD, is a retired
clinical anesthesiologist with 30
years experience and a member
of the ACA’s Medical Advisory
Committee. She has been a hemipelvectomy amputee since she was a teen-ager.
Terrence P. Sheehan, MD, is the
medical director for Adventist
Rehabilitation Hospital of
Maryland and the director of its
Amputee Rehabilitation Program.
He is also a member of the ACA’s Medical
Advisory Committee.
Mary Williams Clark, MD, is a
pediatric orthopedic surgeon
and a member of the ACA’s
Executive Publications Committee.
Becky Bruce is a former ACA
information specialist and a
bilateral lower-limb amputee.
“I’ve just been told I need an
amputation, and I am really afraid.”
This is a typical reaction to such life-altering news.
The unknown is frightening, and you may know
little, if anything, about surgery or amputation. You
may have never even met a person with limb loss.
Just knowing the answers to a few basic questions
should help alleviate much of the fear you have.
Can I speak to someone else
who has had the same type of
amputation?
If you are having emergency surgery, this may be
impossible. “Fortunately, true emergencies are rare,”
says Douglas G. Smith, MD, ACA medical director. If
there is time, you should contact the ACA toll-free
at 888/267-5669 to see if the organization can arrange for you to be visited or called by an amputee
who is of the same gender and age group as you
with a similar type of limb loss.
How long will the surgery take?
Douglas G. Smith, MD: The time required for
different types of amputation surgery can vary
tremendously. A forefoot amputation involving the
toes may take less than one hour, while a complex
hip- or pelvis-level amputation can take four to six
hours. In addition to the different times required
for different amputation levels, the time required
varies according to the quality and involvement of
the tissues. Amputations above the zone of injury,
infection or disease have more normal anatomy
and usually proceed in a more predictable and
straightforward fashion. Amputations done in the
zone of injury, infection or disease can be quite
the very elderly who may suffer from a
multitude of serious medical conditions.
Still, no medical procedure is completely
without risk. The risks involved are
directly related to the health of the patient
and the procedure. If you are elderly,
obese, and have uncontrolled diabetes
with severe heart disease, uncontrolled
hypertension and asthma, you are more
likely to have complications than someone in better health. complex, which can add several hours to
the surgical procedure. In general, amputations below or above the knee performed for diabetes or vascular disease
take the surgeon between two and two
and one-half hours. An additional 20 to 30
minutes before and after the surgery may
be required by the anesthesiologist and
nursing team. (For more information about
the various levels of amputation, go to the
resources section on pages 125-128 and
look under Amputation Levels.)
Isn’t it dangerous to be
anesthetized for surgery?
10
Christina Skoski, MD: There has never
been a safer time to have an anesthetic. In
the last 25 years, deaths due to anesthesia have decreased significantly to
one death per 250,000 to 300,000 cases,
according to recent statistics compiled
by the Institute of Medicine, a leading
scientific advisory body.
Over the last few decades, anesthesiologists have been in the forefront of patient
safety issues. They have advocated the
use of sophisticated monitoring equipment that alerts doctors to potentially fatal
problems in the operating room. Machines
that alert doctors when there are abnormal levels of gases, such as oxygen and
carbon dioxide, and when breathing circuits are inadvertently disconnected are
now the norm. In addition, computerized
mannequins that simulate real-life medical
crises and other educational tools are
routinely used in training programs and
continuing education courses for
physicians. Today, more surgical procedures can
be safely done on premature infants and
How will I be anesthetized,
and is the method painful?
Christina Skoski, MD: There are several
ways of providing anesthesia for amputation surgery. The most common is general
anesthesia during which a patient is
rendered totally unconscious. Usually a
drug is given intravenously (through an
IV) to “knock you out,” and this state is
maintained by a variety of other medications, such as narcotics, muscle relaxants
and inhaled gases. The exact combination
depends on the specific health and medical conditions of the patient.
Other methods are also available. Regional anesthesia is where only a part,
or region, of the body is anesthetized
through the use of local anesthetics. An
example of this is spinal or epidural anesthesia, in which an anesthetic is injected
into the spinal area to anesthetize the
lower extremities and the abdominal area.
Blocks of specific larger nerves may
also be done, such as a block of the femoral nerve of the leg or the axillary nerve of
the arm. These methods are usually done
in combination with heavy sedation, also
given intravenously so that the patient
won’t hear or remember the surgery.
Another alternative is to place tiny
catheters directly into the nerve sheaths
around the area of amputation. Local
anesthetics can then be administered
slowly and continuously directly to the
site by the use of pumps, both during and
after surgery.
More recently, the concept of preemptive analgesia has been widely
adopted by many anesthesiologists and
surgeons. Even under general anesthesia,
pain impulses are still generated and
sent through the spinal cord to the brain
where pain is actually “felt,” even though
the patient is not aware of the feeling. It is
well-known that we can decrease postoperative pain by blocking these painful sensations at the site of the surgery. Preoperative blocks may also prevent the
formation of long-term phantom pains,
although this is still being studied. As a
result, it is becoming very common to use
a combination of anesthetic techniques
to achieve optimal pain control. Using
preoperative nerve blocks, placing an epidural catheter preoperatively, and the use
of continuous pain pumps in combination
with general anesthesia is becoming the
norm.
Of course, not all methods are applicable to all patients, and individual medical
histories must be taken into consideration. In addition, not all anesthesiologists
are comfortable with and skilled in all of
the newer techniques. Ideally, pain control should begin before
surgery. Discuss your pain control and
anesthetic options, what methods and
drugs have worked well for you, and any
concerns you may have about any procedures with your anesthesiologist. Qualified medical professionals welcome
and encourage questions about surgical
procedures. Moreover, studies have
shown that well-informed patients heal
faster and report a better overall surgical
experience. Be sure that all of your questions are answered clearly and completely.
Additional Information
American Society of Anesthesiologists
www.asahq.org
www.asahq.org/patientEducation.htm
Anesthesia Patient Safety Foundation
www.apsf.org
If a child is having surgery,
may a parent or guardian stay
with him or her when he or
she is being put to sleep?
Mary Williams Clark, MD: This usually
depends on the anesthesiologist who will
be taking care of your child and the age
of the child, but it is a relatively common practice for a parent to be there. In
addition, your child can usually bring a
favorite toy or blanket along to hold while
going to sleep and waking up.
Is the surgery painful? What
about the period afterward?
Douglas G. Smith, MD: Amputation
surgery divides all of the tissues present
in our body, skin, muscle, blood vessels,
nerves and bone. There is, unfortunately,
pain associated with this major type
of surgery. The amount of pain a given
individual feels in response to amputation
surgery can vary over the entire 0 to 10
scale that the healthcare team commonly
uses to rate a person’s pain, with 0 as no
pain and 10 as the worst pain. Unfortunately, why people have different amounts
of pain and why people perceive pain
more or less intensely than others is not
well-understood.
The perception of pain following surgery can also depend on the amount of
pain that was present before the surgery.
In general, the worse people’s pain is
before their amputation, the lower they
typically rate their postoperative pain.
I have had some individuals with very
severe vascular disease-related pain even
tell me that their pain was much less right
after the amputation. I have also had the
opposite occur, where people told me that
their pain was much worse the first few
days after their amputation.
On average, most people rate the pain
in the 7 to 10 range for the first 24 to 48
hours and then tell me the pain lessens
to the 4 to 8 range for the next few days.
Within four to 10 days, most people are on
all-oral medication, and many individuals
can taper that medication down over four
to eight weeks.
It is important to let your healthcare
team know if you experience pain; they
will do everything they can to make you
more comfortable.
Becky Bruce, former ACA Information
Specialist: My actual surgeries were
not painful for me. I was under general
anesthesia for most of them. I have also
had local anesthesia for a couple of toe
amputations, and none of them caused
me any pain either. I was either sleeping
or so “jacked up” on Valium that I never
felt a thing. In addition, the pain I experienced
following my amputation surgeries was
minimal. I experienced some muscle
spasms that were a tad unnerving but not
painful. There are many different options
for managing postsurgical pain. I’ve tried
many, and the one I liked best was the
postsurgical epidural. They placed a small
catheter in my spine that slowly dripped
morphine, Demerol, or something else
and numbed me from the waist down. I
was able to move, but nothing hurt. The
only drawback to this method for me was
that it was sometimes difficult to urinate,
and I needed to be catheterized to do so. About how long will I have to
stay in the hospital after the
surgery?
Douglas G. Smith, MD: Hospital stays can
also vary tremendously depending on
the complexity of the surgery and how
soon individuals regain appetite, strength,
balance and the ability to transfer on
and off the toilet. The time will also vary
depending on whether the person will be
going from a regular hospital to a skilled
nursing facility, to home, or to a rehabilitation center. For most people, the hospital
stay will be somewhere between three
and 10 days.
11
Will I always have pain in my
residual limb?
Terrence P. Sheehan, MD: During the
first several months after amputation, all
people have pain in their residual limb.
This pain can be separated into musculoskeletal pain and neuropathic pain
and is intensified initially with touch and
pressure. Fortunately, this type of pain
generally diminishes over time, usually
within the first two months.
This pain can often be effectively treated with medications that block inflammation, bone/muscle pain, and nerve pain.
Usually, these medications are decreased
after a couple of months to the point that
they are just taken on an as-needed basis.
Residual-limb pain can also be effectively
relieved by repeated touch and massage,
wearing a shrinker, and using a prosthesis
that fits properly rather than an ill-fitting
one. (See pages 48-53, 56-57.)
Residual-limb pain should not increase
in frequency or intensity.
What might cause or increase
pain in my residual limb?
12
Terrence P. Sheehan, MD: Pain in the
residual limb is usually caused by a few
common culprits. If the limb loss is new,
your residual-limb pain might be caused
by an infection, either deep or superficial,
at the surgery site. An infection can also
occur at any time on the surface of the
skin if hygiene has been marginal.
If you use a prosthesis, you can develop
pain in your residual limb as a result of a
poor fit, which can cause abnormal pressure or rubbing against your skin. This
pain is an alarm that tells you that the skin
is being traumatized and that you should
not wear your prosthesis until it has been
fitted properly and your skin has been
evaluated for damage.
Tips for Preventing or Dealing
With Residual-Limb Pain
Terrence P. Sheehan, MD: Pain is a
symptom and can have one or more
causes. You may, therefore, need multiple
healthcare professionals to help you sort
through the causes of the pain and the solutions for it. These professionals should
include your physiatrist, your surgeon,
and your prosthetist, who should all work
together and communicate as a team in
your best interest. This is best done in an
amputee clinic setting.
Because a poorly fitting prosthesis
can quickly cause a sore and infection
if not addressed, early communication
with your doctors and prosthetist about
the onset of your pain and changes in
it is very important. It is also important
to understand that pain is often affected
by the patient’s emotional, spiritual and
psychological states as well as his or her
physical problems. To effectively deal with
your pain, therefore, these issues also
need to be addressed, possibly through
individual counseling, peer visitation or
support groups.
You should not accept pain as chronic
until you have exhausted the many treatment options available. This may mean
that you have to seek the counsel of
multiple pain clinicians rather than settle
for insufficient relief of your pain.
Over the long term, your pain may
come and go just like my grandmother’s
“achy” days did with the cold or damp
weather. Still, you need to have a plan for
these painful days, including knowing
how to comfort yourself during them.
I am privileged to care for many people
with limb loss, and although most have
moments of pain, I can’t think of any that
have such unresolved pain that they are
not living their lives. One person has even
chosen not to use a prosthesis because
she has not been able to achieve a comfortable fit. Fortunately, she is pain-free
most of the time and is enthusiastically
living her life. That’s what it’s all about,
right?
may increase the phantom pain are usually things that feel fine with good nerves
but feel bad to these misbehaving nerves,
such as heat, cold, extremes in weather,
applied pressure, light and normal touch,
certain positions, changes in position,
caffeine, stressful daily situations, monthly
cycles, your son-in-law (just kidding),
etc. It is an individual experience. What
is common, though, is the fact that when
you’re lying in bed late at night with the
lights out, the TV off, and the dog asleep,
this pain usually rages. This is because all
of the other distracting sensations have
been diminished, which just pronounces
the hyper-excitability of these misbehaving nerves.
Will I have phantom pain? If
so, how intense will it be?
Terrence P. Sheehan, MD: Phantom pain
is common after amputation, and some
have reported that it occurs in 80 percent
of amputee patients. It often accompanies
phantom sensation, and both are perceived as being in the missing limb.
The pain is often described as cramping, aching, burning or lancinating.
Though it can be quite severe in a small
percentage of amputees, it is also quite
responsive to medications and rehabilitation techniques.
The longer a person has had pain in
his or her limb before surgery, the more
likely he or she is to have phantom pain
afterward. Fortunately, this pain usually diminishes with time, and chronic phantom
pain is rare.
What might cause phantom
pain to increase?
Terrence P. Sheehan, MD: To understand
what might increase, or exacerbate, phantom pain, you need to understand that this
pain is nerve-cell hyper-excitability. Thus,
things that would ordinarily excite the
nerves in the limb would also hyper-excite
this group of nerves that are behaving
poorly to begin with. So, the things that
I’ve seen advertisements that
claim that certain products or
treatments can prevent, alleviate or cure phantom pain? Are
these claims true?
Terrence P. Sheehan, MD: I have not
come across any product or technique
that claims to prevent phantom pain, but
there are many things, such as medication and rehabilitation techniques, that
can alleviate it either partially or totally. To
avoid being taken advantage of by scams,
however, you need to be under the care
of a credentialed professional, and you
need to use a systematic approach to
find which of these particular agents or
techniques gives you relief.
Tips for Dealing With
Phantom Pain
Terrence P. Sheehan, MD:
• Find an amputee specialist, such as
a physiatrist or chronic pain specialist,
who knows about phantom pain through
education and experience with patients.
• Use a systematic approach to trying
the different approaches and medications.
• Speak up! Ask why you should try a
specific medication or technique, what
the side-effects are, and what science
supports the treatment. There are plenty
of nontraditional approaches to pain out
there. You need to use something that is
safe and that has been proven effective.
If a product or technique sounds bizarre,
shaky and unreasonable, it is probably
ineffective. You need to believe in your
treatment; if trust is established, the treatment will probably be more successful
because of the placebo effect.
• Write the When,Where, How,Why, and
To What Extent details about your phantom pain in a journal. This will help your
doctor better understand your pain and
will give you an objective tool to see how
your pain changes over time and whether
it has been affected by treatment. Use a
scale of 0 (no pain) to 10 (severe/worst
pain) to help define your pain.
• Know that it’s OK to get second and
third opinions from pain specialists.
Unfortunately, we are better-educated
consumers of household products, such
as washers and dryers, than we are of
the products and techniques that might
benefit our bodies.
• Realize that narcotics are short-term
friends; they are not usually effective
against phantom pain, they are addictive, and their effect wears off, making
you need more to get the same marginal
relief. Perhaps even worse, they are
constipating.
• Find a way to talk about your pain. A
constant, intermittent pain is disruptive to
the moments and relationships in one’s
life. You need to talk about these disruptions and develop healthy strategies to
deal with them. Remember: It’s not the
quantity of life but the quality that’s important. This “talk” can occur with psychologists, with peers in a group or individually,
and/or with spiritual advisors. Be open;
your mind is very powerful in controlling
your body. Picture the man walking on hot
coals.
For more information about pain, go to the
resource section on pages 125-128 and
look under Pain.
13
Milestones
The Positive Signs on the Road to Recovery
by Robert Gailey, PhD, PT
N
Nothing is quite as bewildering or scary as the unknown. That’s why one of
the most frustrating aspects of limb loss is trying to understand what lies
ahead on the road to recovery.
Some of the most common questions include:
When will I receive my first prosthesis? How long
must I wrap my residual limb? When will I walk
again? How long does phantom pain last?
The usual “one-size-fits-all” response is something like, “Well, that depends,” or, “Everybody is
a little different.” But in today’s world, where our
lives are measured by calendars, clocks and coffee
spoons, we want something more. We want a date,
the number of days, weeks or months.
Are We There Yet?
The hard truth is that we all march to a different
drummer; not everyone progresses at the same
pace. A date is nothing more than a goal, a target
that everyone likes to have so that we can measure
our progress. Most folks are content to accept
whatever time frame is offered by their physician,
physical therapist and prosthetist. The trouble with
such goals is that if we fall short, we all feel a small
sense of failure, whether real or imagined. We wonder what we did wrong. Unfortunately, recovery
time after limb loss can be unpredictable because
there are so many variables unique to each person,
and rehabilitation doesn’t come with a crystal ball.
So what are the common signs or milestones
that tell us we’re on the road to recovery? There
are several, and though the time frame for reaching
each may vary, almost everyone will reach their
goals and eventually get to the place they want to
be. Like any journey, the anticipation of getting to
where we want to go always makes the trip seem
longer than it actually is.
14
Making the decision. One of the hardest decisions a person will ever face is the one to have
a limb amputated. Few people actually have the
decision made for them because most people are
required to give their consent. Though it’s difficult
to weigh the concerns and agree to adopt a life
with an uncertain future, many people have said
that once they made their decision, there was a
great sense of relief. Once the decision was made,
they could begin to look to the future.
Getting out of bed. The day after your surgery is
one of the most difficult to get through. It’s painful.
It’s sad. And it’s scary. The “simple act” of getting
out of bed and starting the process of rehabilitation takes a tremendous amount of courage. Typically, just sitting on the edge of the bed and moving
over to the chair is a painful but very important
beginning.
Walking with an assistive device. As the old
saying goes, the journey of a thousand miles begins with a single step. Even if you have upper-limb
loss, getting out of bed and walking is an important
first step. Learning to walk while in the hospital is
not an easy task, but it will help improve your mobility around the house and will make getting back
to your way of life much easier. However, many
people are not ready to walk just after surgery
because of weakened muscles or other medical
conditions; in their case, it is not practical. If this is
the case for you, don’t worry; your time will come.
Meeting family and friends for the first time.
Once you get home, you may have difficulty with
having your family and friends around. Most
people are not themselves during this time. You
may feel uncomfortable because your body has
changed, the residual limb is painful, and
you may require considerable assistance.
Family and friends may also feel uncomfortable. They may find it hard to strike a
balance between being helpful and being
bothersome. Also, choosing the right
words in conversation can be awkward.
It’s up to you to set the tone. Be yourself;
don’t be afraid to ask for what you need,
and let them know what you can do for
yourself. If someone says something
awkward, laugh it off and realize that no
harm was intended. Accept their support
and establish your independence.
Accepting a peer visitor or joining an
amputee support group. Asking others
for help can be very difficult for some
people. However, accepting a visit from a
peer visitor or another amputee can not
only be comforting but can help you find
the answers to many questions you may
have. If knowledge is power, then getting
in touch with an ACA-certified peer visitor
or support group can be a critical milestone. (See pages 32-38.)
Restoring physical conditioning. From
the first day after surgery, you should be
striving to increase your cardiovascular
endurance, strength, balance and flexibility. Even if exercise was not a significant
part of your life before, it must be now. The
sooner you can rise from a chair on your
own, walk moderate distances with an assistive device, and maintain your standing
balance, the sooner you will be ready for
prosthetic fitting. Moreover, you will begin
to notice that everyday activities, such as
moving around the house, getting in and
out of the car, and going places in the
community, will be much less demanding.
Reducing residual-limb swelling. Using
compression dressings will help reduce
the swelling and create a “stable limb.”
(See pages 48-53.) In other words, the
swelling will not increase and decrease
as much throughout the day. This is a key
milestone; once the residual limb is stable,
the pain will typically decrease enough to
begin the fitting process for the prosthesis. For some people, however, their
residual limb may always fluctuate in
volume or swell because they tend to retain fluids or have a secondary condition
that causes swelling. If this is a problem
for you, it just means that you will have to
continue using a compression wrap when
you’re not wearing your prosthesis.
Meeting your prosthetist. For many
people, finding the right prosthetist is a
process that takes some time. Because
your prosthetist could potentially be a
lifelong caregiver, it is important that you
take the time to explore your options
and interview several prosthetists. (See
pages 19-20.) You need to discuss what
your prosthetic needs and options are and
make several decisions about components,
socket design, and other issues that you
are probably not very familiar with. Taking the time to ask questions, talk to other
amputees, and do a little research on your
own can really help with the decisionmaking process.
Receiving your first prosthesis. There
is something unique about receiving your
first prosthesis. Many folks will tell you
that there is a sense of turning the corner.
There is a quiet excitement because you
feel that once you receive the prosthetic
limb, your life will be whole again. You’ll
be able to go on walks with your spouse,
dance or use both arms. Sometime during
the fitting process, however, it will strike
you just how difficult it is to use a prosthesis in the beginning. Though it’s easy
to let yourself become disappointed, you
15
milestones. Again, some accommodations may have to be made, but they will
be worth it. Sharing your leisure interests
with other people with limb loss is a great
way to overcome any obstacles and to
make a few friends with common interests.
Accepting your new body. One of the
most difficult milestones to overcome is
the overall acceptance of limb loss. A gentleman with multiple amputations once
said that for him to return to work, sports
and life, he had to let go of the notion that
he would still be able to do things the way
he once did. Only after he stopped trying
to do things as a “two-legged” person and
learned how to do them with the body he
now had was he able to move on and embrace life. The key for many people with
limb loss is to stop focusing on the part of
their body that they have lost and to focus
on the whole of the person that they are.
In short, be comfortable with who you are
and continue to live life to the fullest.
have to understand that with time and
practice, you will become increasingly
skilled at using your new prosthesis.
Learning to use your prosthesis.
Regardless of whether it is an upper- or
lower-limb prosthesis, prosthetic training
takes time. Unfortunately, many people
only learn the basics, just enough to do
simple tasks with their prosthetic arm
or to walk a little. Seeking a physical or
occupational therapist that specializes
in prosthetic training is just as important as finding a qualified prosthetist.
Far too many people fall short of their
prosthetic potential simply because they
don’t receive proper training. Learning
how to use a prosthesis correctly can
reduce the amount of effort required and
increase your functional ability. Once you
have mastered the use of your prosthesis,
everything else will tend to become just a
little bit easier.
16
Getting back to work. For many people,
retirement seems to be a logical option
after the loss of a limb. But this must be
a considered decision, not one made
simply because of limb loss. Several
studies have shown that most people
with limb loss can and do return to work,
regardless of the level of amputation or
number of limbs amputated. If you are a
leg amputee, the main difference may be
the amount of standing and walking that
you can do compared to before. Work is
a positive experience, and for many of us,
it provides a sense of worth and contribution to the community. Getting back
to work should be a goal. You may have
to make some adaptations, but, for most
people, the minor accommodations are
well worth being able to get back to the
job. (See pages 69-71 and 78-84.)
Getting back to leisure activities.
Returning to activities that you once
enjoyed is one of the most significant
Remember, there are no time frames
for reaching each milestone because
everyone is different. Set short-term goals
that you can reach within a reasonable
time while keeping your eye on your longterm goals. Don’t become impatient and
so focused on the milestones along the
road of recovery that you miss all of the
other things that life has to offer. Think of
each step as an event in itself. Then, after
some time, look back and see which ones
you’ve completed. You might find that you
are farther along than you thought.
About the Author
Robert Gailey, PhD,
PT, is an associate
professor at the
University of Miami
School of Medicine,
Department of
Physical Therapy,
and health science
researcher, Miami
Veterans Affairs Medical Center.
Being a Proactive Patient
What Does It Take?
M
by Kevin Carroll, MS, CP, FAAOP
Many situations require us to decide what we want and then
figure out how to get it. This process is sometimes called
“information gathering” or “problem-solving.” I simply call it
“being proactive.”
Being proactive as an amputee means
that you take the leading role in your
prosthetic care and rehabilitation. Though
doctors, prosthetists, therapists and
friends can all provide good advice and
support, only one person will be there
through every phase of your care and rehabilitation, pressing through each challenge and celebrating each achievement.
That one person is you. In spite of the fear,
depression, pain, frustration, exhaustion,
and physical and emotional limitations
you may be experiencing, you must be
your own best advocate. Asking questions, doing your own research, standing
up for what you believe you deserve,
expecting a lot from your care team; these
are the hallmarks of being proactive.
Getting Started
If the word proactive doesn’t exactly describe you, keep in mind that even “nice”
people can learn to be proactive. You can
be direct and nice. You can have high
expectations and be nice.
Clearly, being rude and difficult to deal
with are usually not effective ways to get
what you want. But being proactive is another matter entirely. Being proactive often
increases your sense of confidence and
can help you feel more optimistic about
the future. The more you present yourself
in a proactive manner, the easier it gets.
When you’ve “done your homework” on
a subject, asking for what you need is
not so difficult because you know what
you’re talking about. And when being
proactive leads directly to the result you
were after, you’ll be willing to use this approach again when the situation calls for
it. Remember the truth in that old saying,
“The squeaky wheel gets the grease.” Being withdrawn or undemanding will not
get you closer to what you want. I have
repeatedly seen that people who expect
more and ask for more tend to get more.
The Youngest and the Oldest
The importance of being a proactive
patient and consumer is heightened
when the person is at either end of the
age spectrum. People older than 60 and
parents of infants or young children
with prosthetic needs may find that they
are not encouraged by their healthcare
providers in the same way as young,
active adults. Unfortunately, recovery expectations are sometimes lower for older
adults because of their age and/or other
health-related issues. Yet I have worked
with hundreds of people in their 70s, 80s
and 90s who have been very successful prosthesis users. Still, older adults
and their healthcare providers may have
to stand up and argue to get insurance
companies to pay for the components
they believe will help them the most.
Regarding children, some physicians and
prosthetists believe that it is not necessary to rush babies and younger children
into prosthetic care; however, there are
still several reasons to begin consulting
with a prosthetist as soon as possible,
even if you ultimately decide that you will
not pursue prosthetic care for your child.
Being proactive means believing that
Photo courtesy of Hanger Prosthetics & Orthotics, Inc.
whether the person is very young or very
old, he or she deserves every opportunity
to be successful.
Proactive Relationships
A good place to start being proactive is in
your interactions with healthcare providers, beginning with your doctors. People
who are facing amputation need to know
every available option before undergoing
surgery. Ask your doctors to explain various surgical options, what you can expect
after surgery, and what their recommendations are for prosthetic care, including
the use of Immediate Post-Operative
Prostheses (IPOPs). Ask for information
resources, and then follow up with your
own research on the Internet and in medical and prosthetic journals. Always seek a
second medical opinion before undergoing surgery. And if your physician does
not refer you to a prosthetist for a preoperative consultation, take the initiative to
schedule one on your own. Remember:
Once you have recovered from surgery,
you will have little or no contact with the
surgeon, but you will require the services
of a prosthetist for the rest of your life. The
sooner you begin building this relationship, the better. You have every right
to request a preoperative consultation
that includes you, the surgeon and the
prosthetist. If you have had an emergency
amputation without the benefit of a preoperative consultation, you are entitled to
a detailed postoperative discussion with
17
18
the surgeon, and you should also request
a meeting with a prosthetist as soon as
possible. In addition, you might benefit
from talking to an ACA-certified peer
visitor who has experienced the same or
similar surgery and recovery. Don’t wait
for the doctor, prosthetist or anyone else
to suggest this; be proactive. Contact the
Amputee Coalition of America at 888/2675669 to help you locate a certified peer
visitor in your area.
As you move into the rehabilitation
phase of your recovery, you will be working closely with a prosthetist, a physical
therapist, and possibly an occupational
therapist. All of these professionals will
provide you with information and options to consider. Again, be proactive; be
prepared to tell them your rehabilitation
goals, and ask plenty of questions about
techniques and products. Supplement this
by using the search engine on your computer to tap into an array of information
to help guide you through the process of
selecting and fitting a prosthesis and to
help you learn how to get the most from
your rehabilitation. If at any point you feel
you are not being heard by your prosthetist or therapist, it is your right to seek a
consultation with a different provider and
decide if he or she can better meet your
needs. (See pages 19-20.)
Unfortunately, some prosthesis users
need revision surgery to achieve better
prosthetic fit and function. If you are
ever advised to have revision surgery, be
proactive by:
• Seeking at least two medical opinions
• Seeking at least two prosthetic opinions
• Requesting to meet with one or more people who have had similar revision
surgeries
• Doing some independent research on revision surgery
procedures/options and subsequent
prosthetic options.
Educating Yourself
Everyone with a limb difference can
benefit from the wealth of information
available through the ACA. ACA publications and the ACA Web site (www.
amputee-coalition.org) are some of the
best resources for educating yourself
about amputation, prosthetics, rehabilitation and lifestyle recovery. The Web site
also offers an online support group, an
online library catalog of amputation-related
materials, and links to other key sites,
publications and journals.
In recent years, the market for prosthetic components has exploded with
choices. There are hundreds of socket designs, feet, hands, knees, and accessories
to select from. It can be overwhelming
to try to determine what is best for your
specific situation so educate yourself as
much as you can and allow your prosthetist to help guide the decision-making
process. Learn about the components you
are interested in, and, whenever possible, talk directly with others who are
using them. Remember, however, that just
because a certain item works great for
someone else, it does not mean that the
item will be exactly right for you. Fortunately, some manufacturers allow a trial
period for their components so be sure
to ask if this is an option. Look at what is
important in your life and what activities
you wish to pursue, and use this to guide
your questions, research efforts, and
choice of components. Also keep in mind
that product marketing and advertising
are methods for increasing the sales
of specific items. Balance the fabulous
claims you may read about in ads with
the input of your prosthetist, the experiences of other users of the products, and
the more objective information you are
able to gather on your own.
Ultimately, your choice of components
may be dictated by your managed-care
organization or Medicare. If you disagree
about the components your plan will
cover, you will have to be prepared to
stand up and argue your case. Your doctor and prosthetist can be very helpful. If
you cannot get authorization on certain
items, these healthcare providers can
help you get authorization or determine
the next best choice. If nothing else works,
you have the option of paying for the item
out-of-pocket. Still, that’s something you’d
probably like to avoid.
Be Proactive!
Remember: Being proactive is your
choice. Make it happen by asking questions, doing research, standing up for
what you deserve, and setting high
expectations for your healthcare team.
For more information, go to the resources
section on pages 125-128 and look under
the following headings: Advocacy, Seniors
and Youths.
About the Author
Kevin Carroll, MS, CP,
FAAOP, has been a
practicing prosthetist
for 28 years. He is
the vice-president
of prosthetics for
Hanger Prosthetics &
Orthotics in Bethesda, Maryland. He presents scientific
symposiums to healthcare professionals
both nationally and internationally and
manages one-day prosthetic clinics for
patients with complex cases.
How to Choose Healthcare Professionals
and When to Change Them
I
by Sherry Marchi, RN, BSN, CWOCN
In the current era of managed care, ever-changing healthcare plans
provided by employers, Medicare and Medicaid, choosing a healthcare
provider and maintaining a relationship with him or her is often difficult.
For amputees, the need to find or keep a healthcare provider who is willing to participate in a
team approach to care and who has experience
with issues related to amputation adds an entirely
different dimension to the decision.
The Basics
Some aspects of your choice may be out of your
control, such as the location of providers and
whether they accept your health insurance. When
considering those aspects that are in your control,
however, it might help to identify some of your
needs and preferences in advance. Following are
some of the questions you might ask yourself:
•Do I want to see an MD (medical doctor) or a
nurse practitioner?
•Do I want a male or female practitioner?
•Do I want a large clinic with more availability to
see practitioners (but not always the same one)
or a small clinic where I will see the same one or
two practitioners?
•Do I want a practitioner with a hospital
affiliation?
Questions you may want to have answered by
the practitioner when you interview him or her
could include the following:
•What are your qualifications (both education and
work experience)?
•Do you have experience with people with limb
differences?
•Will you allow enough time for me to ask
questions?
•Will you try to answer my questions to my
satisfaction?
•How do you maintain patient confidentiality?
•What type of options do you offer for patients to
pay fees not covered by insurance?
•Are you aware of the team approach to dealing
with people with limb differences? This is
19
especially important for people with limb
differences who may need to work with
a prosthetist, physical and occupational
therapists, a physiatrist, the staff of a
wound care clinic, and other assorted
healthcare professionals. The primary
healthcare provider’s ability to work
effectively within such a team will be a
tremendous asset to your overall care.
•Can you provide references?
Many of these same questions and
considerations apply to choosing a
prosthetist. Though many amputees stay
with the prosthetist they meet during their
hospitalization or rehabilitation stay, this is
not always possible, necessary or desirable, especially if he or she does not meet
your needs. Whether you are an avid rock
climber, a dancer, a swimmer, a sailor,
or a self-proclaimed couch potato, your
prosthetist should be able to work with
your lifestyle and understand your goals
and expectations.
You’ll want to ask how much experience the prosthetist has both in years of
practice and with your specific type of
limb difference, if he or she is available
after hours and on weekends if your prosthesis is damaged or breaks, and if he or
she is certified by the American Board for
Certification in Orthotics and Prosthetics
(ABC) or the Board for Orthotist/Prothetist
Certification (BOC). These certification
boards demonstrate through testing that
a prosthetist has met established standards for orthotics and prosthetics. The
certification is voluntary and is renewed
every five years with requirements for
ongoing training and education.
Ongoing Care
Care of your prosthesis and your affected
limb extends far beyond the immediate
postsurgical stay and rehabilitation. It is
important to know what commitment your
prosthetist, your insurance company, and
your healthcare providers are willing to
make. Questions to consider include the
following:
•How often does your insurance provide
for a new limb or modifications to an
existing limb?
•How successful is your prosthetist and
provider when they recommend a new
prosthesis outside of an insurancedesignated time frame? Do they get the
job done for you? They may need to
write a letter of medical necessity, use
photo documentation of residual-limb
complications or socket degeneration,
and communicate with other members
of the healthcare team.
•Is your prosthetist proactive as an advocate for optimizing your potential?
•Does your prosthetist use check or test
sockets before assembling your permanent prosthesis or when modifying an
existing prosthesis?
•How willing is your healthcare provider
to refer you to specialists for specific
problems, such as pain and skin problems on the residual limb?
•How do these healthcare professionals
respond when you have questions or
problems?
Never underestimate the value of other
people’s experiences. Attend a local amputee support group if one is available in
your area. Talk to other amputees there or
even hang out in the waiting room of the
prosthetist’s office you are considering to
talk to his or her patients. Talk with local
orthopedic surgeons and physiatrists for
recommendations if you are new to the
area.
Remember: It’s OK to interview any
healthcare professionals you are considering using. You are the customer and an
important part of the team. They should
value your questions and be interested in
your ideas about your care or the care of
your loved one. You should feel comfortable with their experience and abilities.
By asking questions, identifying your
expectations, and knowing your rights
as a consumer (see page 2), you will be
confident that you have chosen and still
have the team that is right for you.
Tips for Dealing With Healthcare Professionals
• If you have a question or concern about your
residual limb or prosthesis, it’s OK to call your
prosthetist. He or she can often tell you what is
normal or abnormal and allay your concerns.
• Your primary healthcare provider and your
prosthetist should deal with any wound on your
limb promptly.
• Only you know how you feel. You are your own
best advocate. If your limb feels uncomfortable,
it’s OK to push your prosthetist to check and
re-check your socket until you get a comfortable fit.
20
• Write down your questions so you will not
forget to cover them in your doctor’s or
prosthetist’s office.
• If an explanation or advice doesn’t make sense,
get a second opinion.
About the Author
Sherry Marchi, BSN, RN, CWOCN, is a boardcertified wound ostomy continence nurse and
runs the Providence Wound Ostomy Clinic in
Everett, Washington. She is currently finishing her
Master’s Degree in Nursing at the University of
Washington as a clinical nurse specialist with a
focus in wound and ostomy care. THE New Experience of Limb Loss
The National Limb Loss Information Center
Help Is Just an E-Mail or Phone Call Away
T
The Amputee Coalition of America’s National Limb Loss Information
Center (NLLIC) provides free information about limb loss to amputees,
their family members and caregivers, medical professionals, and other
interested parties in the United States.. Whether you would like to
communicate with us by phone or e-mail, the NLLIC’s trained information
specialists are ready to assist you with any questions you might have.
In addition, a librarian is on staff to ensure that the
NLLIC’s information is current and easily accessible via our Web site and online library catalog.
in your state.
•You would like to locate certified prosthetists and
prosthetic facilities in your state.
The NLLIC Call Center
What are some of the NLLIC’s most
frequent requests?
At the NLLIC’s call center, our information specialists are continually researching, producing and
analyzing vital information that can make a difference in your quality of life.
You can reach us by phone Monday through
Friday, 8am-5pm (EST), through our toll-free number – 888/AMP-KNOW (888/267-5669). Or you can
reach us by e-mail day or night through our Ask
the NLLIC Web page (www.amputee-coalition.org/
forms/nllicask/index.html). Remember, no question
is too big or too small. We’ll do our best to ensure
that your requests are answered in a detailed and
timely manner.
Why should I contact the NLLIC?
•You or someone you know is a new amputee.
•You need information about your healthcare and
future.
•You would like to schedule a visit from an ACAcertified peer visitor.
•You would like to find an amputee support group
• New Amputee Information – Most new amputees have a serious need for general, introductory information concerning the specifics of their
situation and their level of amputation. Therefore,
the NLLIC created the New Amputee Information
(NAI) packet, which includes state-specific lists of
support groups, prosthetists, and facilities, as well
as introductory articles and fact sheets related
to your individual situation. This packet helps the
NLLIC fulfill its mission of educating amputees so
that they can make informed decisions about their
healthcare and future.
• Funding Information – As a nonprofit organization, the ACA does not provide funding; however,
we recognize the need for quality information
about funding sources and have created a funding
packet to address this need. The packet provides
contact information and links for organizations
that help with funding and is intended to help you
21
22
locate and obtain financial assistance for
prostheses, motorized wheelchairs, home
and auto modifications, education, and
much more. This packet also describes
the benefits of vocational rehabilitation
and includes numerous articles that shed
light on various avenues for locating and
securing funding.
• Pain Information – The NLLIC offers a
pain packet that addresses the various
types of pain associated with limb loss,
especially phantom pain. This packet,
which includes a detailed fact sheet that
describes the many types of pain, various
methods of treatment, the various roles
that healthcare professionals can play in
its treatment, and links and contact information for numerous organizations that
specialize in this field, can help you learn
to minimize, or at least lessen, your pain.
• Diabetes Information – Each year, more
than half of all amputations performed in
the United States are caused by diabetes
and its complications and secondary
conditions. As a result, we have written
several articles and fact sheets that look
at the relationship between diabetes and
amputations. These articles discuss the
importance of foot care, diet and regular
exercise, all of which are vital to maintaining a healthful lifestyle for people with
diabetes.
• Advocacy Information – The ACA has
assumed the challenge to address and
improve the health and care of people
living with the absence of a limb and
those at risk for primary amputations or
secondary conditions, including additional amputations. The ACA’s Action Plan for
People with Limb Loss (APPLL) focuses
on two main areas:
1. Identifying ways to resolve access and
coverage issues for prosthetics and
adequate healthcare for all amputees in
the U.S. (One way to address insurance
coverage issues is by promoting insurance parity at the state level.)
2. Promoting a healthful lifestyle, which
can prevent primary amputations and
secondary conditions that can result in
additional amputations.
For more information on APPLL, visit
the advocacy area of the ACA Web site
(www.amputee-coalition.org/aca_
advocacy_stateparity.html) or call the
ACA. Many articles are available on the
Web site for download. In addition, the
site contains a Web log (blog) dedicated
to the state parity effort (www.acaparity.
blogspot.com).
Note: No funding from the Centers for
Disease Control & Prevention (CDC) is
used to support ACA advocacy efforts.
What are some of the
resources the NLLIC offers?
• Because We Care Packets – One of the
NLLIC’s main goals is to provide information to new amputees and to let them
know that they can rely on us during this
difficult time.
• ACA Web Site – The ACA Web site offers
a wide variety of educational resources to
assist patients and professionals in their
search for specific information.
• Ask the NLLIC – You may complete our
online information request form at www.
amputee-coalition.org/forms/nllicask/
index.html and send it to us by e-mail. An
information specialist will then research
the topic and provide you with a packet
related to your specific inquiry.
• Information Phone Line – If you do not
have Internet access, you may simply
call the ACA’s information line (888/AMPKNOW) to speak directly with an ACA
information specialist.
• Library Catalog – You may begin your
research by searching our comprehensive online library catalog to access
articles, books, fact sheets, PubMed©
abstracts, and Web sites related to your
interests.
• NLLIC Fact Sheets – Our fact sheets
cover a wide variety of topics. A few
of the more popular titles are Financial
Assistance for Prostheses and Other
Assistive Devices, Amputation Statistics
by Cause: Limb Loss in the United States,
Pain Management and the Amputee, and
Prosthetic Limb Donations.
• Topic of the Month – This publication is
a bibliographical resource list of articles,
books, Web sites and other resources
available on a particular subject.
• APPLL Core: Your Health – Each month,
this publication highlights a new health
promotion topic.
• ACA NewsFlash – On the ACA NewsFlash section (www.amputee-coalition.
org) of the ACA Web site, you can stay
abreast of relevant news from or about
amputees, professionals and industry
leaders; read the latest ACA press releases;
and keep current on hot topics related to
limb loss.
• Links of Interest – You may view ACA’s
Links of Interest page to locate informative Web sites relevant to your specific
question or topic of interest. Sites are
listed according to subject area.
• ACA Marketplace – You may visit the
ACA Marketplace to order ACA resources,
make advocacy contributions, and join
the ACA or renew an existing membership.
Your healthcare and future are important to us. Contact us today so that we can
help you locate the information you need.
National Limb Loss
Information Center
888/AMP-KNOW
Ask the NLLIC Web Page
(www.amputee-coalition.org/
forms/nllicask/index.html)
Dealing with your emotions
Abilene Artificial Limb, LLP • Advanced Prosthetics & Orthotics of America • Chilla Computer & Internet Services
College Park Industries • Comfort Products, Inc. • Copeland Prosthetics & Orthotics • Lithographics, Inc.
Marshall J. Cohen, Esq., ACA Board of Directors Member • Omni Prosthetics and Orthotics, Inc. • Ossur
Paul E. Prusakowski, CPO, LPO • Ryder Orthopaedics, Inc.—Ft. Myers, FL • Team O and P, Inc.
Emotional Recovery
The Long and Winding Road
R
by Patricia Isenberg, MS
Recovery: Return to a normal condition.
Have you ever wondered why some people seem to bounce back from the tragedies in their
lives, while others find themselves trapped in a cycle of despair, anger or depression?
Most of us compare ourselves to those
around us. It is natural, then, for people
with limb loss to compare their recovery process to the experiences of other
amputees.
People respond differently to the loss
of a limb, however, and many issues affect their recovery. The following factors
largely account for the individual nature
of recovery:
•Issues associated with the
amputation: Was it due to trauma or disease? What is the level of
amputation? How successful was the surgery? What are the chances for returning to what is a “normal” life for you?
•Individual characteristics: What is your age or health status? How will this affect you financially?
•Personality traits: How have you coped with problems before? What is your attitude about your health? Do you feel a sense of control in spite of the loss?
•Physical and social environment: Do you have a support system? Are the
services you need appropriate and
accessible? What are your living arrangements and how will they
accommodate your limb loss?
24
Recovery is an ongoing process, much
like a long and winding road. Though several phases typically occur on the road
to recovery (see table on page 25), when
they will occur for a particular person
and in which order is not predictable.
One person may experience the phases
one after another and then regress to
an earlier phase. Someone else might
skip one or more phases or find that one
phase overlaps with another. Each phase
of recovery has special challenges and
requires different coping strategies. Unfortunately, some people never completely
recover.
Sometimes the road to recovery is
bumpy, and a range of emotional issues
might arise. The following information
describes some of them. We hope that
by reading these brief descriptions, you
will be able to recognize problems early
and seek appropriate help, when necessary. For additional information, call the
Amputee Coalition of America (888/AMPKNOW) or see the resources listed at the
end of this article.
Anxiety disorders are the most common emotional disorders, affecting more
than 25 million Americans. These disorders are different from normal feelings of
nervousness or uncertainty that we all
have. Untreated anxiety disorders cause
you to avoid people, places or situations
that trigger or worsen your symptoms.
People with anxiety disorders may also
suffer from depression or abuse alcohol
or drugs to try to cover up or avoid the
symptoms. (See pages 26-30 for more
information about depression and drug
abuse.) Although treatment takes time,
most anxiety disorders respond well to
psychotherapy and/or medication.
Generalized Anxiety Disorder (GAD).
GAD is characterized by chronic worry
and irritability that seem to have no
cause. The worry is more intense than the
current situation warrants. Restlessness,
trouble falling asleep or staying asleep,
and muscle tension are other symptoms.
GAD can occur during any phase of
recovery from limb loss. Seek support or
professional advice if the symptoms are
incapacitating or last six months.
Panic Disorder. People with panic disorder experience an overwhelming terror
that occurs suddenly and without warning. Symptoms include rapid heartbeat,
shortness of breath, fear, and a sense
of losing control or “going crazy.” Panic
attacks might even occur during sleep.
Since the attacks cannot be predicted,
people may constantly worry about having another one. Panic disorder is often
related to traumatic amputations, such as
accidents or military injuries, and could
begin during any phase of recovery. Seek
professional help if you have four or more
attacks within a month or have persistent
fear that lasts longer than one month following a panic attack.
dealing with your emotions
Phases of Recovery
The Amputee Coalition of America uses these six phases to describe the recovery process following the loss of a limb.
PHASE
CHARACTERISTICS
THOUGHTS & FEELINGS IN THIS PHASE
Surviving amputation surgery and the
pain that follows
Hanging on; focusing on present to get through the pain; blocking
out distress about the future – it is a conscious choice not to deal
with the full meaning of the loss; self-protection
Suffering
Questioning: Why me? How will I …?
Intense feelings about the loss: fear, denial, anger, depression;
vulnerable and confused; return to enduring stage; emotional
anguish about the loss of self adds to the pain
Reckoning
Becoming aware of the new reality
Coming to terms with the extent of the loss; accepting what is
left after the loss; implications of the loss for future – how will
roles change; ongoing process; minimizing one’s own losses in
comparison to others’ losses
Reconciling
Putting the loss in perspective
Regaining control; increased awareness of one’s strengths and
uniqueness; more assertive; taking control of one’s life; selfmanagement of illness and recovery; changed body image; need
for intimacy
Normalizing
Reordering priorities
Bringing balance to one’s life; establishing and maintaining
new routines; once again, doing the things that matter; allowing
priorities other than the loss to dominate; advocating for self
Thriving
Living life to the fullest
Being more than before; trusting self and others; confidence;
being a role model to others; this level of recovery is not attained
by everyone
Enduring
Phobias. These are irrational fears that
lead you to avoid situations that trigger
anxiety. The symptoms are similar to
those experienced during a panic attack
and may occur particularly following a
traumatic event. If you experience fear
that seems unreasonable or excessive
and that interferes with your activities or
relationships, seek professional advice.
Post-Traumatic Stress Disorder (PTSD).
PTSD can occur in anyone who experiences a traumatic event, especially if that
event was life-threatening. The symptoms can range from reliving the event
(flashbacks) such as a military injury to
an overall numbness. Other symptoms include anxiety, exaggerated or inappropriate startle reactions, nightmares, and an
inability to sleep. These symptoms may be
seen as a common response immediately
following the trauma but should be
evaluated for ASD (see following description). PTSD requires professional assistance.
Resources
Acute Stress Disorder (ASD). ASD
occurs in the first month following a
traumatic event. The symptoms that
define ASD overlap with those for PTSD,
although there are a greater number of
dissociative symptoms for ASD, such as
not knowing where you are, forgetting
important parts of the traumatic event, or
feeling as if you are outside of your body.
ASD is found following car accidents and
in victims of violence. ASD is a strong
predictor for PTSD, meaning that people
who experience ASD are more likely to
develop PTSD later on. If ASD symptoms
continue for more than one month past
the traumatic event, an assessment for
PTSD is appropriate.
American Psychological Association
www.apa.org
American Psychiatric Association
www.healthyminds.org
American Trauma Society
www.amtrauma.org
Anxiety Disorders Association of
America
www.adaa.org
Mental Help Net
www.mentalhelp.net
National Center for Post-Traumatic
Stress Disorder
www.ncptsd.va.gov
National Institute of Mental Health
www.nimh.nih.gov
National Mental Health Association
www.nmha.org
25
The Dual Danger of Diabetes and Depression
by Bill Dupes
L
Life is full of emotional ups and downs; we all have our
share of good days and bad. But when the “down” times
keep going or interfere with your ability to function, you
may be suffering from a common, but serious, illness:
depression. Depression affects your mood, mind,
behavior, relationships, and even your body.
The Elusive Symptoms of Depression
Depression’s symptoms are sometimes mistaken
for conditions that are associated with other illnesses. Depression symptoms include:
• Persistent sad mood
• Loss of interest in activities that were once enjoyed
• Drastic change in appetite or weight
• Difficulty sleeping or oversleeping
• Restlessness
• Loss of energy
• Feelings of worthlessness or guilt
• Difficulty thinking or concentrating
• Recurrent thoughts of death or suicide.
A Vicious Circle
26
Research shows that depression is closely linked
with trauma such as limb loss and with serious
illnesses such as diabetes. Depression can strike
anyone, but the risk is doubled for people with diabetes and two to four times higher for amputees.
Even otherwise healthy people with depression are at greater risk for deteriorating health or
developing an illness. Part of the reason may be
that some of the factors that increase the risk of
diabetes also cause or increase the risk of depression. Some of these risk factors include being
overweight, doing little or no physical activity and
failing to receive healthcare. Depression leads
to poorer physical and mental functioning, so a
person is less likely to follow a prescribed diet
or medication plan. The worse a person’s health
becomes, the deeper the depression grows. And
so it goes.
Research has shown that about 19 million
people in the United States experience depression
each year. So why is it that nearly two-thirds never
get the help they need, even though counseling
and medication could improve their mental health?
A recent study published in the Centers for Disease
Control and Prevention’s Morbidity and Mortality
Weekly Report serves to explain this phenomenon
and demonstrate that depression and diabetes are
even more closely linked than previously thought.
A Wake-Up Call for the City
That Never Sleeps
More than half a million New Yorkers have been
diagnosed with diabetes, and an estimated 300,000
New Yorkers experience serious psychological
distress (SPD), including depression. New Yorkers
with diabetes are twice as likely to experience
depression, anxiety, schizophrenia and other psychological disorders than those without diabetes,
according to a study conducted by the New York
City Department of Health and Mental Hygiene.
The survey of nearly 10,000 adults also found that
people with comorbid (two coexisting medical
conditions) diabetes and depression are more
likely than those with only diabetes to experience
poor physical and mental health, live in poverty,
and lack access to proper healthcare and social
support.
Among New Yorkers with both diabetes and
depression:
• 49 percent were divorced, separated or
widowed compared with 25 percent of people with diabetes only.
• 70 percent had incomes under $25,000
compared with 43 percent of people with
diabetes only.
• 11 percent had private insurance
compared with 41 percent with
diabetes only.
• 42 percent cited cost as reason for not getting a prescription filled or not seeing a doctor compared with only 16 percent of people with diabetes only.
• 26 percent used emergency rooms
as their usual source of healthcare
— that's more than twice that of
people with diabetes only (10 percent).
In addition, New Yorkers with both conditions were:
• Nearly twice as likely to report fair
or poor health (78 percent compared
with 40 percent in the diabetes-only
group)
• Nearly three times more likely to
report that poor health limited their
activities (64 percent compared with
22 percent in the diabetes-only group)
• Seven times more likely to report
limited daily activities due to poor
mental health (63 percent compared
with 9 percent in the diabetes-only
group).
Depression: An Equal
Opportunity Disorder
Nationally, depression occurs more often
in females than in males. This holds true
across racial/ethnic groups but appears
more often among African Americans and
Hispanic Americans. Other factors associated with depression include poor education; being separated, divorced, widowed
or never married; and unemployment.
While both men and women can
develop the standard symptoms of
depression, they often have different ways
of coping. Conditioned to be the “strong,
silent type,” men may say they’re tired,
grouchy or bored rather than admit their
true feelings.
Instead of asking for help, men may
turn to alcohol or drugs or become
frustrated, discouraged and angry. Some
throw themselves into their work to hide
their depression from themselves and
others; some may respond to depression
by engaging in reckless behavior.
Women often express depression by
becoming withdrawn and gaining or losing weight. Although women are equally
as reluctant as men to seek professional
help, they are far more likely to rely on
less formal resources, such as prayer or a
support system of family or friends.
But depression isn’t just for grownups; even infants are vulnerable. Studies
indicate that stress has been associated
with the development of allergies and
the triggering of Type 1 diabetes or the
autoimmune process behind it. Infants
and young children are typically in close
proximity to their caregivers and are
very sensitive to their environment and
the mood of their parents. Psychological
stress in the family (marital problems,
irregular sleeping patterns, illness, low
socioeconomic status, etc.) can be passed
on to a child, creating stress levels severe
enough to trigger or promote the autoimmune progression.
Finding Your Way Back
Fortunately, depression can be controlled
if diagnosed and properly treated. The
first step should be a thorough examination to rule out any physical illnesses that
may cause depressive symptoms. Since
some drugs cause the same symptoms
as depression, you should tell your doctor
about any medications you are using. If
a physical cause isn’t found, your doctor
will refer you to a mental health
professional for evaluation.
The most common treatments for depression are antidepressant medication,
psychotherapy or a combination of both.
Deciding which method is right for you
will depend on the nature of the depression. Medication can relieve physical
symptoms quickly, while psychotherapy
can provide the opportunity to learn more
effective ways of handling problems.
There are other things you can do to
help yourself get better. Some people
find participating in support groups very
helpful. It may also help to spend some
time with other people and to try activities
that make you feel better, such as mild
exercise or yoga. Just don’t expect too
much from yourself right away. Feeling
better takes time.
If you don’t know where to go for help,
ask your doctor or health clinic for
assistance. You can also check the Yellow
Pages under “mental health,” “health,”
“social services,” “crisis intervention
services,” “hotlines,” “hospitals” or “physicians.” Or you can contact the National
Hopeline Network at 800/784-2433 or on
the Web at www.hopeline.com to locate a
crisis center. The emergency room doctor
at a hospital may also be able to provide
temporary help for an emotional problem
and tell you where to get more help.
For more information, see page 25 or go
to the resources section on pages 125128 and look under Diabetes.
27
Hooked! The Danger of Prescription-Drug Abuse
I
by Saul Morris, PhD
It starts from the very moment of amputation when most patients are given a PCA (patientcontrolled analgesia) pump so that when they wake up from the deep sleep of anesthesia they
can control their own level of pain.
What am I talking about? The possibility of becoming a prescription-drug abuser or addict.
What Is Drug Abuse and Addiction?
Drug abuse refers to using a drug for purposes for
which it was not intended or in excessive quantities.
Drug addiction is a state of physical or psychological dependence on a drug and is characterized by compulsive, at times uncontrollable, drug
craving, seeking, and use that persist even in the
face of extremely negative consequences. Physical
addiction is characterized by needing more and
more of the drug to achieve the same effect (tolerance) and withdrawal symptoms that disappear
when further medication is taken.
All sorts of drugs can be abused, including illegal
drugs (such as heroin or cannabis), prescription
medicines (such as tranquilizers or painkillers),
and other medicines that can be purchased off of
the supermarket shelf (such as cough mixtures or
herbal remedies).
The Risk for Amputees
It is estimated that 4.7 million adults abuse prescription drugs each year, many of whom become
addicted. Though amputees are not necessarily the
greatest abusers, the amount of prescription drugs
given to new amputees to control their preoperative and postoperative pain greatly increases their
chances of becoming abusers or addicts. And we
haven’t even counted all of the other medications
they might already be taking. As an amputee, you
will probably be taking many different drugs, not
just for pain but also for sleep, nervousness,
depression, etc. That’s a lot of drugs, and it is very
easy to fall into the trap of abuse and addiction.
Dealing With Pain
28
For amputees who suffer from chronic nonmalignant pain, opioid drugs are commonly prescribed
because of their analgesic, or pain-relieving,
properties.
Among the compounds that fall within the opioid
class – sometimes referred to as narcotics – are
morphine, codeine, and related medications.
Morphine is often used before or after surgery to
alleviate severe pain. Codeine is used for milder
pain. Other opioids prescribed to alleviate pain include oxycodone (OxyContin is an oral, controlledrelease form of the drug), propoxyphene (Darvon),
hydrocodone (Vicodin), hydromorphone (Dilaudid),
and meperidine (Demerol), which is used less often
because of side-effects.
Contrary to common fears, numerous studies
have shown that addiction is extremely rare in pain
patients taking opioid drugs, even those with a
history of drug abuse or addiction. Patients with
chronic nonmalignant pain will develop a physical dependence on opioid drugs, but this is not
the same thing as addiction, which is an aberrant
psychological state.
Unrelieved pain has many negative health consequences, including:
• Increased stress, metabolic rate, blood clotting and water retention
• Delayed healing
• Hormonal imbalances
• Impaired immune system and
gastrointestinal functioning
• Decreased mobility
• Problems with appetite and sleep
• Needless suffering.
Chronic nonmalignant pain also causes many
emotional/psychological problems, including low
self-esteem, powerlessness, hopelessness and
depression.
Because pain control is so important in helping
people avoid these negative consequences, it is important that patients not be overly fearful of becoming addicted as long as they take their medications
as prescribed.
The medical community once wrongly believed
that giving pain-control medication to patients
would automatically lead to addiction. As
a result, many patients suffered unnecessarily. Fortunately, it is now understood
that if such patients take their medication
as prescribed, the possibility of becoming
addicted is almost nonexistent. Note the
words “as prescribed.”
If you follow your healthcare providers’
instructions, you should have no problems or worries. If you do not, watch out!
I am trained in both medicine and
psychology, and I myself came very close
to becoming addicted to pain medication
after my own amputation surgery!
What Causes Drug Abuse
and Addiction?
This depends on the nature of the drug,
the person taking the drug, and the circumstances under which it is taken.
Some medications – for example, certain
sleeping pills or painkillers – are physically addictive. They have a specific effect
on the body that leads to tolerance and
withdrawal symptoms. Others may lead to
a psychological addiction if people have a
craving for the effect that the drug causes.
There has been some speculation
that some people may be more prone to
drug abuse and addiction than others.
Research is being done to learn whether
there may even be genes that predispose
certain people to addiction. Social circumstances are also important factors in drug
abuse. Peer pressure, emotional distress,
and low self-esteem can all lead individuals to abuse drugs. Ease of access to
drugs is another important influence.
People abuse drugs for a reason. Understanding a person’s motivation helps
explain why he or she is abusing drugs.
Prescription-Drug Abuse
Though prescription medications, such
as pain relievers, tranquilizers, stimulants
and sedatives, are very useful treatment
tools, sometimes people do not take them
as directed, and, as a result, they may become addicted. Pain relievers, for example,
make surgery possible and enable many
individuals with chronic pain to lead productive lives. While most people who take
these medications use them responsibly,
the inappropriate or nonmedical use of
them is a serious public health concern.
Patients, healthcare professionals, and
pharmacists all have roles in preventing
the misuse of and addiction to prescription medications. When a doctor prescribes a pain relief medication, central
nervous system (CNS) depressant or
stimulant, the patient should follow the
directions for use carefully, learn what
effects the medication could have, and
determine any potential interactions with
other medications. The patient should
read all of the information provided by the
pharmacist. Physicians and other healthcare providers should screen for any type
of substance abuse during routine history-taking, with questions about which
prescription drugs and over-the-counter
medicines the patient is taking and why.
Providers should note any rapid increases
in the amount of a medication needed
or frequent requests for refills before the
quantity prescribed should have been
used; these may be indicators of abuse.
Commonly Abused
Prescription Medications
While many prescription medications
can be abused or misused, opioids, CNS
depressants and stimulants are the most
commonly abused.
Opioids can effectively change the way
a person experiences pain. In addition,
they can affect regions of the brain that
determine what we perceive as pleasure, resulting in the initial euphoria that
many opioids produce. They can also
produce drowsiness, cause constipation,
and, depending upon the amount taken,
depress breathing. Taking a large single
dose could even cause severe respiratory
depression or death.
Opioids may interact with other medications and are only safe to use with other
medications under a physician’s supervision. Typically, they should not be used
with substances like alcohol, antihistamines, barbiturates or benzodiazepines.
Since these substances slow breathing,
their combined effects could lead to
life-threatening respiratory depression.
Long-term use can also lead to physical
dependence. The body adapts to the
presence of the substance, and withdrawal symptoms occur if use is reduced
abruptly. This can also include tolerance,
which means that higher doses must be
taken to obtain the same initial effects.
Note that physical dependence is not the
same as addiction; physical dependence
can occur even with appropriate longterm use of opioid and other medications.
Individuals taking prescribed opioid
medications should not only be given
these medications under appropriate
medical supervision but should also be
medically supervised when stopping their
use in order to reduce or avoid withdrawal symptoms. Symptoms of withdrawal
can include restlessness, muscle and
bone pain, insomnia, diarrhea, vomiting,
cold flashes with goose bumps (“cold
turkey”), and involuntary leg movements.
Warning Signs of Drug
Abuse or Addiction
Many signs indicate that an individual
might have a drug or alcohol addiction.
The following drug addiction signs are
cues to look for in yourself or others. Be
aware that possessing several of these
signs does not always mean that a drug
addiction is present. If one is suspected,
however, be supportive of the individual
on his or her road to recovery.
29
Drug Addiction Signs
• Increase or decrease in appetite,
changes in eating habits, unexplained weight loss or gain
• Smell of substance on breath, body
or clothes
• Extreme hyperactivity; excessive talkativeness
• Change in activities; loss of interest
in things that were important before
• Changes in habits at home; loss of interest in family and family activities
• Difficulty in paying attention;
forgetfulness
• Lack of motivation, energy, self-esteem, or discipline; bored; “I don’t care” attitude
• Defensiveness, temper tantrums,
resentful behavior (everything’s a hassle)
• Unexplained moodiness, irritability
or nervousness; violent temper or
bizarre behavior
• Unexplained silliness or giddiness
• Paranoia, suspiciousness
• Excessive need for privacy; keeps door locked or closed, won’t let people in
• Secretive or suspicious behavior
• Car accidents, “fender benders,” household accidents
• Change in personal grooming habits
• Doctor shopping – several appointments with different doctors to stock up on medication
Do I Have a Problem?
You have a problem if you keep craving
and using a drug even if it’s causing trouble
for you. The trouble may be with your
health, with money, with work or school,
or with your relationships with family or
friends who may be aware you’re having a
problem before you realize it because they
see changes in your behavior.
What Other Problems
Might I Experience?
30
When you abuse any medication, you risk
doing irreparable damage to yourself, your
family, and your relationship to them. If you
abuse certain medications, for example,
they will alter your ability to balance properly, and you could fall and hurt yourself.
Some could also cause you to miss physical therapy and/or doctor appointments,
thereby hindering your healing process.
Unfortunately, even if you take some
of these medications as your healthcare
provider instructs, you may still experience
some of these problems and unwanted reactions. If this happens, contact your healthcare provider at once so that he or she can
change your medication or the dosage.
Can Addiction Be Treated?
Yes, but addiction is a chronic, relapsing
disease. It may take a number of attempts before you can remain free of drugs or alcohol.
If you have any kind of drug problem, please
take your first step toward healing today.
Why Should I Quit?
Breaking your addiction is the only way
to stop the problems drugs are causing in
your life. It may not be easy to quit, but your
efforts will be rewarded by better health,
better relationships with the people in your
life, and a sense of accomplishment that
only living drug-free can give you. As you
think about quitting, you may want to make
a list of your reasons for wanting to quit.
she can be your biggest ally, even if
you’re trying to quit a drug he or she
prescribed. Your doctor may be able to
prescribe medicine that makes you less
likely to crave the addictive drug. Talking
with your doctor or a counselor about
your problems can be helpful too.
3. Get support. Contact one of the local
organizations that provide assistance
for substance abuse or addiction. Look
up their contact information in the
Yellow Pages or call your local health
department for a list. For referrals to
treatment programs, you may also call
800/662-HELP or visit the Substance
Abuse & Mental Health Services
Administration online at
http://findtreatment.samhsa.gov.
These groups want you to succeed
and will give you the tools and support
you need to quit using these drugs and
move on with your life. Ask your family
and friends for support too.
Note: This article is intended for educational purposes only. For specific advice
about appropriate drugs for your condition, potential side-effects/interactions,
or drug abuse and addiction, you should
contact a doctor and/or a mental health
professional.
Sources
National Institute on Drug Abuse
www.nida.nih.gov
Schaffer Library of Drug Policy
www.druglibrary.org/schaffer/asap/
factsheet.html
About the Author
Saul Morris, PhD, is a
How Do I Stop?
below-knee amputee
The first step is realizing that you control
and veteran naval comyour own behavior. You can’t control how
mander, who is educated
the people around you act, but you can
in both psychology and
control how you react. It’s the only real
medicine. He is the
control you have in your life. So use it.
founder and director of
The following are the first steps to break- M-STAR (Michigan Society To Advance
ing your addiction:
Rehabilitation), an organization that
1. Commit to quitting. Once you decide provides amputee peer counseling to new
amputees.
to quit, make plans to really do it.
2. Get help from your doctor. He or
Not Just Surviving, But Thriving
S
by Rick Bowers
Since she first realized that she might need to have her left
leg amputated, four things have helped Iris Navarro
continue to thrive: her faith, a special book, a great sense
of humor, and a new computerized prosthetic leg.
Navarro and Lance
Armstrong at the Tour
de Georgia
When Navarro fell from a ladder several years ago
and crushed some bones in her leg, the doctors
first tried to save it. Unfortunately, the leg never
healed. Ultimately, her doctor told her that she
should have the leg amputated and asked her if
she wanted to think about it.
“No, I’ve thought about it enough,” she replied,
giving permission to amputate. She had already
mentally prepared herself by talking to prosthetists and amputees and by reading You’re Not
Alone, a book about remarkable amputees.
“That book was wonderful!” she says. “At first,
I couldn’t read it. I would cry every time I would
open it. And then one day, I just said, ‘I’ve got to
read this book.’ I read every story, and it was so
inspiring to see how others had endured limb loss
and accepted it.”
In addition to hearing others’ inspirational
stories, she considers the ability to laugh to be essential to the healing process. “People go with the
flow,” she explains. “If I had come home depressed
after losing my leg, people would have followed
my lead. But when I came back upbeat, people
said I was an inspiration.”
Along those lines, Navarro has found several
ways to have fun with her prosthesis. She has her
prosthetic socket painted in bright colors with images of fish, starfish and sea horses, and she uses
it as a conversation piece.
Her prosthesis also has a nifty attachment
called a push-button rotator, which allows her to
rotate her leg at the knee and turn it upside down.
Though the device is meant to help her with daily
activities like getting dressed and getting in and
out of her car, she also uses it for comic relief.
If she notices a child staring at her prosthesis,
she’ll call the child over to her. “When they come
over, I ask them if they stepped in chewing gum,
how would they get it off the bottom of their foot.
Then I say, ‘Let me
show you how I’d
get it off mine.’ Then
I rotate my leg at
the knee until it’s
completely upside
Navarro
down and the botdemonstrates
tom of my shoe is
her favorite trick
facing the ceiling,
and it just flips
them out,” she says,
laughing.
Her amputation hasn’t stopped Navarro from
laughing or slowed her down. Now in her late
60s and retired, she goes everywhere. Her flashy
1970s-era yellow convertible Pontiac and a new
beach buggy help her get around on and off the
road with ease, and her new computerized prosthetic leg, which was largely paid for by insurance
and Medicare, helps her get around on foot. In the
future, she wants to visit soldiers who have lost
their limbs.
Navarro has learned to thrive as an amputee,
and she’s more than willing to teach others her
simple secret of success. It’s all about painting
your world in beautiful colors, laughing at yourself, comparing yourself to those less fortunate,
and serving others. It’s about seeing the world as
a place of hope – a place of bright beginnings.
For more information about push-button rotators,
please visit www.amputee-coalition.org/first_step/
firststepv2_s1a04.html
To learn more about thriving as an older amputee,
order a copy of Senior Step: A Guide for Adapting to
Limb Loss, which is published by the ACA. Individual
copies are $15, including shipping and handling. To
order, call the ACA toll-free at 888/267-5669.
31
When You Are Down and Troubled …
Finding Emotional Support
R
by Patricia Isenberg, MS
limb loss. But how do you find the help that is best-suited
to your needs?
This article will talk about the advantages
of peer support and professional support,
as well as how to evaluate the support
that you receive.
Peer Support
Peer support gives you an opportunity to
discuss your feelings with someone who
truly understands. The benefits of peer
support include lowering stress, raising
self-esteem, and finding new ways of
coping.
Peer support, from a trained volunteer,
can be an important component in your
recovery since sharing experiences with
another amputee can teach you:
• That others have similar feelings of
loss and grief
• What it’s like to perform daily
activities without a limb
• How a prosthesis is used
• Where to find information and
assistance
• How to deal with changes in family
relationships
• How others cope with amputation.
32
The support resources available from
the ACA’s National Peer Network and
National Limb Loss Information Center
include:
• Peer visitation. “There’s nothing like
talking to another amputee.” “I wish
someone had told me about peer
visitation.” An ACA-certified peer
visitor is a volunteer trained to be a
good role model; to offer emotional
support in person, by phone or by
e-mail; and to give you information
about resources that are available.
ACA peer visitors do not give advice
or promote any products or services.
• Online support group. “I live in
a rural area and would have no
support without friends I made in
the online support group.” The ACA
professionally moderated online
support group is for people who do
not have a local group or those who
cannot attend a local meeting. The
group meets twice monthly to share
experiences and information.
• Local support groups. “My support
group is like my extended family.”
Amputee support groups are a great
source of emotional support and
education. Many also offer social and
recreational opportunities. You may
contact the ACA for a list of support
groups and their locations and
contact information. (See pages 34-35.)
• Information center. “I received a large
packet of information that covered
all the questions I had.” Trained
information specialists, librarians, and
professional advisors are available
to answer your questions or find the
additional resources you need to
facilitate your recovery. (See pages
21-22.)
Choosing a Psychotherapist
or Counselor
Sometimes outside help from a trained,
licensed professional is needed in order
to work through problems. Through
© Mike Oliver/Landmine Survivors Network
Reaching out is the first step in emotional recovery from
therapy, millions of Americans of all ages
learn to live healthier, more productive
lives. Counseling works by helping you
look at your behaviors, feelings and
thoughts and learn more effective ways
to deal with difficult situations. Counseling, whether in individual, group or family
sessions, is most effective when you and
the therapist are able to communicate
openly. Research has demonstrated that
emotional, cognitive and physical health
are closely linked and that therapy can
improve a person’s overall health status.
The American Psychological Association
recommends that you consider professional help if:
• You feel an overwhelming sense of
helplessness and sadness.
• Your problems do not seem to get
better, even with help from family,
friends or peers.
• You find it difficult to carry out
everyday activities (you are unable to
concentrate on work, for example).
• You worry excessively, expect the
worst, or are constantly on edge.
• Your actions are harmful to yourself
or to others (you are drinking too
much alcohol, abusing drugs, or
becoming overly argumentative and
aggressive, for example).
• You think about harming yourself or
someone else.
What Type of Therapist Do
You Need?
There are many types of licensed mental
health professionals, with different educational backgrounds, training, licenses,
philosophies and techniques.
• Psychiatrists are medical doctors
and can prescribe medication.
Some psychiatrists also provide
psychotherapy but may refer to
and work in conjunction with other
psychotherapists.
• Psychologists usually have a
Doctorate in Psychology and have
completed a supervised internship.
• Counselors usually have a Master’s
Degree in Counseling and have
completed a supervised internship.
• Clinical Social Workers typically
have a Master’s Degree in Social Work
and have completed a supervised
internship.
• Other types of licensed professionals
include Marriage and Family
Counselors and Chemical
Dependency Counselors.
Questions to Ask
In most communities, you have a choice
of mental health providers. Ask for references from your physician, friends, and
the local mental health association. Then,
make appointments to “interview” and
select the person who seems to be the
best fit for you. Ask the therapist:
• What are your credentials? May I see
them?
• How long have you been in practice?
• What experience do you have
working with people with limb loss?
• What are the clinical skills you might
use in working with me?
• How do you view my role in the
process?
• What are the charges? Do you accept
my insurance?
As you are interviewing, observe the
therapist and ask yourself:
• Does this person seem genuine,
respectful, responsive and caring?
• Does the therapist see me as the
expert in my life?
• Do I feel this person will help me
solve my problems?
• How comfortable do I feel talking to
this therapist?
• Did he or she answer my questions?
How Will You Know That
Counseling Is Working?
First, remind yourself that it takes time to
build a trusting relationship with a therapist and to begin to see (and feel) results.
But it is important to evaluate how things
are going. Honest answers to the following questions will help. If your answers
are positive, you are probably on the
right track. If you do not feel good about
some or all of the answers, discuss them
with your therapist, family or healthcare
provider.
• Am I beginning to understand my
problems?
• Do I feel less anxious or worried?
• Is it easier for me to make decisions?
• Do I feel OK with the progress I am
making?
• Am I able to discuss my feelings and
what I need to work on next?
Resources
(See Resources on page 25.)
GUIDELINES FOR EVALUATING A THERAPIST/COUNSELOR
Adapted from the Boston Association to Stop Treatment Abuse
Appropriate
Inappropriate
(Seek help somewhere else)
Unethical
(Seek help elsewhere and report
this behavior)
Qualifications,
Professionalism
• Policies regarding fees and
appointments are clear
• Information about training
and experience are available
• Therapist is concerned about your
needs
• Therapist maintains confidentiality • Unprofessional behavior or
comments (being friendly is
OK, becoming your friend is
not)
• Places too much attention on
therapist’s feelings or problems
• Avoids or refuses to give
information about credentials/
licensing
• Uses alcohol or illegal drugs
during sessions
• Suggests or indulges in an
intimate relationship with you
Knowledge, Skills
• Helps you learn how to deal with your
life your way
• Promotes positive change
• Supports and encourages your selfconfidence and ability to make your
own decisions
• If therapist insists on drugs as
the only treatment possibility
and you are not comfortable
with this
• If you feel that you are giving
in to the therapist, rather than
finding your own way
• Makes degrading, humiliating,
intimidating, or shaming
comments to you or about you
• Pressures you personally,
emotionally or socially in a
way that feels uncomfortable
Use of Feelings
• Treats you with respect, care
and dignity
• Willingly and professionally discusses
your feelings
• Demonstrates how feelings can be
safely discussed and understood rather
than acted upon
• If therapist suggests any
mutual activity that makes you
uncomfortable
• If you enjoy the therapist’s
attention, but feel it’s not right
• Makes inappropriate
comments
• Touches you in any way that
makes you feel uncomfortable
• Has sexual contact with you,
in or out of the office, with or
without your consent
33
Sharing the Knowledge
by Rick Bowers
I
In 2002, Sherri Samuels had her right leg amputated above the knee
following a terrible car accident. As devastating as the surgery was, what
made it worse was not having another amputee to turn to for information
and emotional support.
“No one could tell me how my life would change,”
she says.
Finally, just before the surgery, two people paid
her a visit – a family friend who is a bilateral below-knee amputee and her soon-to-be prosthetist
who is also a below-knee amputee.
“When Skip, the prosthetist, came to see me, the
world changed,” Sherri says. “He hopped into the
room and tossed his prosthesis at me with a great
attitude. He also rode his motorcycle over later on
after I left the hospital. It was just enlightening.” It
was only then that she began to find the ability to
imagine a bright future for herself.
The ACA?
Unfortunately, Sherri didn’t find out about the Amputee Coalition of America (ACA) until she came
home from the hospital. “Nobody in the hospital or
rehab knew about the ACA,” she laments.
She finally discovered the ACA through her
prosthetist. “He had the ACA’s magazines, inMotion
and First Step, on the tables in his office,” Sherri
explains. “Once I found out about it though, the
ACA was very helpful.”
Bob Silver and
William Samuels at the
Memphis Amputee
Support Library
34
The Support Group
The entire incident had a profound impact on
Sherri and her husband, William. In fact, Sherri
had decided while she was still in the hospital to
start a support group for amputees.
“I decided that no one should have to deal with
limb loss alone and struggle to find information and resources like I had,” Sherri says. “I had
already done the research so I would be happy to
share it.”
So when she got out of the hospital, she and
Sherri and William Samuels
William started planting the seeds for the support
group Sherri had decided to call Out On A Limb
– Memphis Area Limb Loss Support.
“We worked very hard,” Sherri says. “We contacted every prosthetist, orthopedist and rehab
facility we could find. We then sent out press
releases to every radio station, television station
and newspaper. We called every local hospital and
a host of social support agencies. We followed up
every phone conversation with a mailing of fliers
and contact information.”
Over time, people eventually began to hear
about them, William says, “and they also began to
realize that we were not out to sell them anything,
which was important.”
William, a social worker at Jewish Family Service, a United Way-affiliated social service agency,
had important and useful experience working with
support groups. In addition, Jewish Family Service
was willing to sponsor the group.
Twelve people, including amputees, family
members and professionals, came to the group’s
first meeting, which is about what they
expected. “Our second meeting had
almost 20,” Sherri says.
The couple became even more
dedicated to making the group a success
once they realized that there were no other amputee support groups in or near the
sprawling city of Memphis, Tennessee,
where they live. And they were charged
up even more when they attended the
ACA’s 2004 Annual Educational Conference & Exposition, where they met other
support group leaders and attended
some ACA meetings and workshops.
Taking Advantage of the ACA
Since the couple found out about the
ACA, it has become an important part of
what they do. The ACA sent them a support group manual and other documentation that they needed to get started, and
the ACA’s library staff advised them on
establishing the Memphis Amputee Support Library, the area’s only public access
library devoted to limb loss. “Don’t try to ‘reinvent the wheel,’”
Sherri says, advising others to also take
advantage of existing resources. “We
sometimes called the ACA two to five
times a day and thought, ‘They’re going to
be sick of us,’ but they never made us feel
we were bothering them,” William says.
When the two did their first peer visit
since Sherri became an ACA-certified
peer visitor and William received a certificate showing that he took the training,
they immediately had inMotion and First
Step sent to the new amputee.
“inMotion is critical,” Sherri explains.
“It’s a very professional-looking publication that shows active and interesting
people doing all kinds of things, and it
really makes a difference to amputees
to see what’s out there. A nice-looking
magazine makes things seem normal.
If you’ve got a magazine on something
about you, you feel like it’s okay.”
Establishing Contacts
ACA publications have also helped the
couple establish relationships with
medical professionals. “Having these
publications adds legitimacy to an
independent support group,” Sherri says.
Because the couple believe that it’s best
to meet contacts in person when possible, having attractive literature to take
along is important.
Although it takes time to meet a lot of
people in person, they advise those starting support groups to do it because a lot
of people are skeptical if they’ve never
heard of you. If you can’t meet them in
person, the couple advise, it’s important
to call the facility and get the name of the
person to e-mail or fax information to so
that it doesn’t just go to a random person
and get lost. The social work or physical
therapy department is a good place to get
the name of a particular contact person,
they say.
“If you’ve got the time, it’s better to take
one place each week, make an appointment, and go down and meet with them,”
William stresses. “Let them see you, take
copies of inMotion along, and don’t take a
lot of their time.”
They agree that prosthetists’ offices
and then social work and physical
therapy departments are probably the
best sources for meeting amputees. They
say it’s usually a waste of time to try to go
through administrators at large hospitals,
unless the hospital is in a small town.
“The administrators are just too busy,”
William says.
Giving Others “Ownership”
of the Group
Although Sherri and William have invested a lot of themselves in starting the
group, they don’t feel the need to control
everything.
“Don’t make your group a ‘sole proprietorship,’” Sherri advises. “Share the
responsibility, and give other people
‘ownership’ in it. One person can’t do
it all, and these people have skills and
ideas that they can bring to the group
to help it grow beyond what you can do
alone.”
The two are more concerned about
fulfilling their mission of support for
amputees than being in charge. They believe that knowledge is power, and they
are willing to share everything they’ve
learned over the years about limb loss
and building a support group.
“The opportunity to share all of the
interesting and useful things that I’ve
learned and to share all of the people that
I’ve met has been a real blessing,” Sherri
says. “Connecting with people – sharing
knowledge. That’s what truly matters.”
Anyone developing or enhancing an
existing amputee support group is
encouraged to call Sherri and William at
901/767-8511 or to e-mail them at MemphisLimbLoss@aol.com. You can also
become a part of their online support list
serve at http://groups.yahoo.com/group/
MemphisLimbLoss/. Reaching Out
to Others
In response to the devastation left
by hurricanes Katrina and Rita, Out
On A Limb provided support and
information to local relief organizations, medical providers, displaced
amputees, people with medical conditions that might require amputation, and their families. Among other
things, members of the group visited
emergency shelters, clinics, and local
hospitals to distribute information
(including ACA’s inMotion and First
Step publications) and provided
trained amputee peer visitors.
“We explained to the Red Cross
how critical it is that sick amputees
facing surgery receive peer visitations and how vital a role the Amputee Coalition of America can have
in helping amputees and families
reestablish themselves after their
trauma,” says a representative of the
support group.
35
Going Public: Overcoming the Emotional
Barriers That Keep You Inside
W
by Warren Sumners, MA
Why is it so difficult for many amputees to go out in public?
Why was it so difficult for me to go out when I first became an amputee?
Warren Sumners talks
to his grandson Mitchell
about their day out at
Disney World.
36
No doubt, there are physical barriers, but the most
difficult barriers for many of us are the ones in our
minds. We can find ways to deal with the physical
barriers if we can get a handle on the emotional
ones.
We know that we should leave the house, and
we want to, but we don’t know how we will be
able to get along in the world as amputees. And
it’s easy to see why this “new world” is so scary. As
new amputees, we must deal with the trauma of
our amputation, its impact on our job or career, its
impact on our finances, the stress of daily living,
depression and anxiety, concerns about sexual relations, our changed relationships with family and
friends, our new self-image, and on and on. And
even if we’ve been amputees for a while, these
problems can periodically return to haunt us.
Still, getting out of the house can help us in
many ways. It can improve our attitude, give us
the opportunity to exercise, help us stay busy,
give us the opportunity to be around others, help
eliminate boredom from our life, help us get back
to work, and help us build our support system.
Usually, the busier we are, the better off we are
physically and emotionally.
The Risks of Going Out
Certainly, when we first go out of our house after
don’t feel well. I’m tired. My hair is a mess.
I’m waiting for a phone call. I need to polish and wax my wheelchair or prosthetic
leg. I want to go alone. I don’t want to go
alone.” Or whatever other excuse we can
think of. Though there are times when
our reasons are quite legitimate, we need
to make sure that we aren’t just making
excuses. Excuses are unacceptable when
they prevent us from living the life we
deserve.
The longer and more often we stay
away from the public, the harder it gets
to go out. Prepare yourself mentally,
and expect the best. A friend used to
say, “Don’t horriblize.” Don’t dwell on the
negative things that might happen if you
go outside. Not going outside also has a
high price.
Small Victories
our amputation, we are at risk for physical problems like falling, getting injured,
difficulty finding a restroom, and even
being stranded with no one to help us.
Perhaps even worse, we are at risk for
being rejected, being thought of as a
“freak,” being ridiculed, being stared at,
being laughed at, being pitied, having to
answer uncomfortable questions, and being dependent on others. Even after a few
trips out of the safety of our house, we
may still be uncomfortable and filled with
self-doubt in public. It will be even worse
if we have had a bad experience the first
time we ventured out.
I have several close friends with
Parkinson’s disease and multiple sclerosis, and they tell me that they have the
same types of fears. Even worse, people
may think that they are drunk because
of their loss of motor coordination and
the “shakes” they experience. Yet, these
friends still strongly agree that getting
out and participating in life is essential to
their long-term health.
Facing the Facts and
Our Excuses
We must face the fact that we are going
to be amputees for the rest of our life. Our
lost limbs won’t grow back! So unless we
plan to stay home forever, we’re going to
have to go out sooner or later.
We must also face the fact that we will
always be physically different from others and then decide how we’re going to
handle that. Sure, we are missing a part
of our body, but the core of our being
was not in that limb. We were not our leg,
arm, foot or hand before becoming an
amputee so why should we be defined in
that way now?
We can define ourselves rather than
letting others do so. We can decide if we
are “handicapped,” “inconvenienced,”
“disabled,” “a person with a disability,”
or “a differently abled person.” It’s our
choice. And it could affect the rest of our
life since others tend to see us as we see
ourselves.
Certainly, it takes hard work to have
a positive attitude. We all have feelings
of frustration, pain, depression, concerns about looking different, feelings of
dependence, and the feeling that we are
a burden to those around us. We can’t let
those be the focus in our life, however.
We must also face our announced reasons, or excuses, for not going out today:
“My stump hurts. It’s too hot or cold. I
My life as an amputee has been a series
of small victories. Like washing dishes,
cooking a complete meal, traveling out of
town on a business trip, taking my grandkids to Disney World. Learn to celebrate
every victory! Going out of the house is a
major victory that will have a long-term
impact on your life and those around you.
My first trips from the house were just
for short walks in the neighborhood. I felt
like everyone was staring at me because
I looked so different. I thought I was a
freak! Actually, everyone just smiled and
waved or stopped to talk and ask how I
was doing. It was actually fun.
Next, I went to the grocery store with
my wife. Many adults would not look at
me and seemed embarrassed. Children
were much more honest and stared at my
empty sleeve. This upset some parents,
but I just smiled at the kids, showed them
my empty sleeve, and told them that I had
lost my arm in an accident. Most would
smile back and say, “OK.”
After that, I moved on to going to
restaurants, to church, and to see friends.
I also joined a Toastmasters club. The amputation did not hold me back or define
me as a person.
37
I discovered that many people fear
what they don’t understand. They haven’t
been around amputees so they don’t
know how to act. We need to make the
effort to help them understand and put
them at ease.
What did you know about amputees
before your amputation? Your family,
friends and neighbors are your support
system, but even they usually don’t know
what to say or do. Don’t expect them to
understand what you are going through
without your help. Two-way communication is critical.
And one more thing: Don’t take your
problems out on them when they make
simple mistakes. They did not cause
your amputation nor are they bad people
because they have all of their limbs.
“Horriblizing”
38
When you think of venturing out into
the world, do you feel queasy thinking about all of the things that might go
wrong? “I might get attacked because
criminals might see my amputation as
a weakness. I might get stranded and
be unable to walk to get help.” These are
certainly things that could happen, but
the solution may be preparation rather
than withdrawal from the world. Some
companies, for example, will give you a
free cell phone that only calls 911 in an
emergency.
Although you might fear being attacked by a stranger, you will more
likely be subjected to all kinds of acts of
courtesy and kindness from them. There
are many nice people out there. They
open doors, offer to carry packages, or
just want to help in any way they can.
One amputee told me she was surprised
to have a perfect stranger pull her out of
a snow bank. Another said that she was
offended at first when people wanted to
help her, but she finally understood that
they were just trying to be courteous.
Accept these kindnesses with grace, a
thank you, and a smile. Note: I know that
they are making that extra effort because
of my amputation, but they just want to
be nice, and it makes them feel good. This
is not pity. Remember, you are a person
of worth.
Meeting Others
Support groups can be a wonderful
addition to your life and a good reason
to go out. At support group meetings,
you will find people you can share your
experiences and concerns with. You will
likely develop special bonds with some
of them. In addition, you will get the opportunity to enjoy special speakers and
“amputee humor” that can only come
from other amputees.
Don’t expect a “pity party.” Most of
these amputees don’t have time for that
in their lives.
I was not eager to attend my first
meeting of Amputees Together in Tampa,
Florida, because I felt that I didn’t need
support. Wrong! It was a great experience. Now, my wife and I look forward to
each meeting. In that room, my wife and
other nonamputees are the ones who are
different.
If you can find a support group in your
area, give it a chance. If not, contact the
Amputee Coalition of America (ACA) to
help you find or start one.
Otherwise, consider joining us in the
ACA Online Support Group once a month.
We discuss all kinds of topics: going out
in bad weather, driving a car, pain management, being a burden to those around
us, and so forth. And there’s also amputee
humor, of course.
If you’re not ready to go out yet, participating in the ACA Online Support Group
is a great way to start meeting people
again and preparing to “go public.” Lean
on us a little. It doesn’t mean that you are
weak; it shows that you are smart.
Every day and every week, we should
be adding good things to our life. Going
out should be one of the things we are
thinking about. Do it now. You can’t do it
any younger.
For more information about the ACA
Online Support Group or to join, call
888/267-5669, or visit the ACA Web site
at www.amputee-coalition.org
About the Author
Warren Sumners has
a Master’s Degree in
Counseling, is a right
shoulder amputee,
and is the volunteer
national facilitator
for the ACA Online
Support Group.
Altered States
Our Body Image, Relationships and Sexuality
B
by Sandra Houston, PhD
Body image (the attitudes we have about our body) and self-perception
(our thoughts, feelings and reactions to our selves) are issues that
everyone deals with.
Early in life, we are taught to be aware of our body
shape, size and physical attributes. Our body
image changes as we go through life, interacting
with others in various situations, both good and
bad. The Hollywood ideal is impossible for most of
us to achieve, yet our self-perceptions are shaped
and driven by the media and lead us to want to be
thinner, prettier and healthier. The further we see
ourselves from these artificial standards of beauty,
the more likely our body image will suffer.
Obviously, after the loss of a limb, we become
even further removed from these ideals. We are
forced to deal psychologically with changes in
function, sensation and body image. But the more
you focus your energy on what’s missing – not
just the limb but also the things you could do before – the more likely you will become depressed
and angry. In fact, many studies have found that
the more negative amputees feel about their body
image, the less satisfied they are with their life.
It doesn’t have to be that way for you, however.
Psychological studies have also found that the
majority of amputees are well-adjusted and have
full and rewarding lifestyles.
The way to learn to live with these altered
perceptions is by recognizing that you’re still basically the same person inside that you were before
the amputation. Successful adjustment is achieved
by focusing on overcoming obstacles, learning
to do the things you enjoyed before (which may
require some creative adjustment), and seeing
yourself as a whole person who just happens to
have a missing body part. Don’t limit yourself with
the label of “disabled.” The focus should no longer
be on what’s gone, but on the future.
If you have a prosthesis and are learning to use
it, your body image will probably begin to change
to incorporate the artificial limb. You’ll know this is
starting to happen when you begin to feel naked
without it.
Relationships
Relationships with others come in many forms.
There are those people we are intimate with,
nodding acquaintances, and those in between. Regardless of the degree of closeness, the connections we have to others have a profound impact
on our quality of life. People who feel lonely and
isolated are far more likely to experience depression and even physical disease than those who
have a sense of connection and community. When
we have no one else to communicate with, we are
left to focus solely on ourselves. With nothing else
to distract us, we tend to dwell on our problems
and pain.
Some amputees may view their body change
as a mark of shame. Afraid of rejection, they
may view themselves as less desirable and then
39
Healthy relationships are based on a
mutual give and take of friendship, trust
and respect. You may have lost some of
your independence after the amputation
so some of these relationships may need
a discussion of how to adjust the balance
of give and take. An amputee’s spouse or
parent may often feel overwhelmed by
the new responsibilities he or she has
to face. Communication is the key here.
Discuss everything, “no holds barred.”
The more you can openly and honestly
discuss your anger, fear and frustrations,
the healthier and stronger the relationship will become.
Sexuality
40
project these feelings onto their friends,
relatives, and even strangers. By doing
this, they shut themselves off from friends
and potential relationships to avoid the
anticipated pain of rejection. Because
social support and intimacy are so
important to our physical and mental
health, however, it is imperative that the
new amputee recover from such a poor
self-image. Fortunately, recent studies
of people’s social reactions to amputees
indicate that a social stigma no longer
exists, particularly when the amputee
initiates the interaction. This is further
evidenced by the marriage of former
Beatle Paul McCartney to Heather Mills,
an amputee.
Love and intimacy are what make us
feel whole. Relationships are one of the
most powerful factors in our emotional
and physical well-being. But to feel connected to others doesn’t mean you have
to surround yourself with a crowd. Your
need for connection can be met through
those with whom you already share love
and affection. It can also be fulfilled by
getting involved in new activities with
others. In this regard, joining an amputee support group can be beneficial in
many ways. When you meet with other
amputees who are living full and satisfying lives, you’re more likely to believe you
can do the same.
Many people believe that if you don’t
have sexual intercourse, you’re not a
sexual person. The truth is that we’re
all sexual beings. Sexual interaction is,
however, the physical expression of our
feelings and emotions in a loving relationship. Unfortunately, sexuality (which
embraces the whole self) is often used
synonymously with sex (generally meaning sexual intercourse).
Touching, affection and emotion are often overlooked aspects of sexual activity,
even though touching and being touched
are basic human needs. In fact, studies
show that babies who don’t receive the
comfort of a loving touch develop later
than those who do.
Unfortunately, some amputees say
that limb loss limits their sexuality. This is
often associated with a negative self-image. Because society’s view of sexuality
is based on youth and physical attractiveness, you may feel that you are less
sexually attractive after your amputation
and avoid this part of life.
Sexual intimacy places you in a
vulnerable position with your partner
and puts you at risk for rejection. It is
crucial, therefore, that you and your
partner discuss your fears and anxieties
about your body and how it might now
look and function somewhat differently.
Without open communication, there is
a lot of room for misunderstanding and
hurt feelings.
Our sensuality and sexuality always
begin with us, and we sometimes create
our own barriers to expressing these
components. One of these barriers is
concentrating too much on the performance and not enough on the sensations.
To fully experience the sensations of
touch, you must let go of all thoughts and
expectations and focus on the sensations
of pleasure available at that moment. As
your awareness of the sexual sensations
improves, both your self-image and level
of sexuality will improve.
Sex is a give and take proposition.
We alternate between focusing on our
partner’s pleasure and our own. There
are many ways to share pleasure so
give yourself permission to expand your
definition of sexual expression. What
may have once been a comfortable
position for you may, since your amputation, be uncomfortable or even painful.
In addition, you may experience balance
problems. Sometimes, something as
simple as positioning with pillows can
help with your stability. Sex is the fun part
of a relationship so experiment, explore,
and enjoy discovering what works best
for you and your partner now. Amputees
all over the world have returned to loving,
sexual relationships after their amputation. You can too.
About the Author
Sandra Houston,
PhD, is a clinical
psychologist and
retired professor
of psychology
from the University of Central
Florida. She had
a private practice
for 30 years, specializing in marriage and
sex therapy. She has been a hip-disarticulation amputee since 1982. With over 50
professional publications and presentations, she continues lecturing and writing
in the field of rehabilitation psychology.
Swept Off Your Feet
by John P. Foppe
B
Being born without arms, I often wondered if I would ever find someone
to love me. I certainly experienced my share of dating failures and
rejections. Despite each slight, however, I tried to maintain a positive attitude.
I rationalized that I had a good life. I pretended to
be content. I admitted that dating was a struggle,
but I kept trying. Though I might have looked OK
on the outside, inwardly, I experienced moments of
deep frustration, resignation, self-pity, anger and
impatience. As I watched my friends and younger
brothers marry, I felt like the hunchback, Quasimodo; I felt weak, ugly and powerless as the world of
love left me behind. One August day, three years
ago, however, my Esmeralda walked in and turned
my life upside down.
I was the guest speaker for a local organization’s
fundraiser, and several of my family members
attended. My brother Jim’s fiancée, Emma, invited
her girlfriend and roommate, Christine, along to
hear me. While people mingled during the cocktail
hour, I sat off to the side with a pen and paper in
my toes, putting the final touches on my speech.
41
42
My brother Ron sat down beside me,
gently poked me, and whispered, “Check
out the good-looking girl who just walked
in with Jim and Emma.” I looked up from
my notes and spotted a tall blonde in
a sleek ruby-red summer dress. Meg
Ryan just walked in the door, I thought.
Her wavy gold hair glided across her
sun-drenched cheeks as she gracefully
turned to shake someone’s hand. In a
smoked-filled room of gray suits and dull
dresses, she radiated a confident, sexy
aura of femininity.
“I bet Paul flirts with her,” Ron quipped
under his breath.
Obviously, she was closer in age to
me than she was to my younger brother
Paul. I was miffed that Ron didn’t see
me as a contender for her attention. But,
thankfully, Ron’s comment irked me into
action. Otherwise, I would have hesitated,
allowing her beauty to intimidate me,
fearing she wouldn’t be attracted to a guy
without arms.
“Not if I get there first!” I said.
Defiantly, I sprang up and walked
across the room to meet her. I remember
the gleam in her piercing blue-green eyes
as I introduced myself. She told me that
she had heard about me through her job
and that she had always wanted to hear
me speak. Flattered, I thanked her for
coming.
Though I have been speaking to
groups for 15 years, the speech I gave
that night was like no other I have delivered before or since. I was nervous but
not for all of the usual reasons a speaker
gets nervous. I could see Christine clearly
from the podium, and I wanted her to
enjoy what I said and to respect me for
saying it. As I spoke, all of the other audience members faded.
“You’re a funny speaker,” Christine said
afterward. I asked her if she wanted to go
out for a drink. We all went to a nearby
lounge, and I, of course, sat next to Christine. We talked effortlessly.
Christine was different, comfortable
to be with. I felt no need to impress her.
I didn’t feel guarded. The cynicism and
fear that usually clouded my head and
hardened my heart were gone.
When it came time to say goodbye,
Christine invited me to a pool party she
was hosting the following weekend in
St. Louis, where she lived. Though I was
delighted, I felt uneasy about going to
a party where I wouldn’t know anyone.
Then I remembered that Emma and Jim
would be there, which was reassuring.
Jim and I went to the party together.
I met Christine’s entire family, and we
visited over a meal of hot dogs and hamburgers, which I ate with my feet. What
were they thinking?
I debated internally whether or not to
go for a swim. I knew that once I took
off my shirt and exposed my stubs,
Christine’s nieces and nephew would ask
all sort of questions. But, this was a pool
party. Christine said she loved the water.
It would have been easier to have muscular arms under my shirt, but long before
that day, I had come to terms with the fact
that my disability would never change. I
had been down the self-pity road before,
and it was a dead end! I needed to take
the higher road, to show her confidence.
And kids’ questions were a good way to
break the ice. So, I sat on a lounge chair,
pulled off my shirt with my toes, and
jumped into the pool. As I suspected, the
kids asked their questions. I answered
matter-of-factly.
Before I left, I asked Christine if she
would like to go out to dinner Saturday
night. “Yes,” she said, without hesitation.
As my one-hour drive home from St.
Louis sped by, her “yes” played over and
over in my mind. Happiness spread down
to my toes.
As the new week began, I couldn’t stop
thinking about her. I counted the days until Saturday. With only two days remaining, on Thursday afternoon, I had to go
back to St. Louis for an appointment. I
realized that I would finish my meeting
about the time that Christine got off work.
I am driving all the way over to St. Louis,
and I will be close to where she lives, I
thought. I’d really like to see her.
Often, when two people first begin to
date, an invisible “person” visits them in
the form of a voice in their minds, speaking to their insecurities and past hurts.
Sometimes it starts to strategize and
calculate the next move for them. “Is this
the right time to call?” it asks. “Maybe it’s
too soon.” Sometimes, the voice simply
prevents them from enjoying the moment,
asking sabotaging questions like “What is
she thinking?” and “Does he like me?”
By Thursday, the insecure voice in my
head was running amuck, asking all sorts
of questions. I called Jim and explained
my concerns. “Everything is already set
up for our date on Saturday,” I said. “I
don’t want to come on too strong. Maybe
I should leave well enough alone?”
When I finally finished, there was a
long silence on the phone. Finally, Jim
spoke in his monotone voice. “You’re plotting, but not about how to see Christine,”
he said. “You’re wondering how to protect
yourself from getting hurt.” The voice of
truth!
How many times had I been hurt
before? In high school, some girls
slighted me in favor of hooking up with
my athletic buddies. In college, my Spring
Formal date cancelled at the last minute
with some lame excuse. In my early 20s,
a young lady stood me up and left me
standing in a restaurant parking lot for
over an hour. And, there was the woman
who fell asleep on my couch while I
cooked her dinner. And now, could I trust
Christine?
Through the line, Jim’s voice brought
my thoughts back. “Get out of your head
and into your heart,” he said. “Be authentic; tell her that you want to see her.”
Jim helped me to see that I had developed a deep wound of rejection. Over
time, a scab of fear had grown over the
injury, and now it was exuding frustration
and resignation. Just removing my shirt
at a pool and pretending to be confident
was not going to do it. Healing meant
stripping myself of something else, of my
deeply-held belief that no woman could
love me – a man without arms. I had to be
truly open to the possibility that Christine
might like me.
I took a deep breath and called Christine. I simply told her that I would be in
the neighborhood and that I’d like to see
her. I proposed that we get a cup of coffee. She agreed.
We met at Borders and talked about
the happenings of our week. A couple of
hours flew by.
On Saturday night, Christine answered
the door wearing a stunning short black
dress. Her gold hair was drawn up into
big, alluring curls. We went to Bar Italia,
a sophisticated restaurant in St. Louis’
cosmopolitan Central West End district.
On the wrought-iron-fenced terrace, we
dined over a delectable meal of veal and
red wine. We talked about our families,
friends and religion. We laughed about
past dating misadventures. There was
never an awkward silence. That night, the
hesitant, insecure voice in my head kept
silent.
Depending on the formality of a
restaurant, I sometimes take off the sock
covering my left foot when I eat. I hold
the utensil in my toes. So after dinner, I
reclined in my chair resting my bare foot
on my knee under the table. While I was
sharing a story, I felt the warm, tender
touch of Christine’s hand holding my foot.
The gleam in her eye was stronger than
ever. No woman had ever expressed such
intimate affection to me before. I instantly
knew I could trust her.
I was swept off my feet! Several weeks
later, after 54 days of dating, we were
engaged.
In the end, Christine says it best: “You
can’t control who you fall in love with.”
About the Author
Professional speaker John Foppe’s mission is to redefine human ability. He is a
disability coach and the author of What’s
Your Excuse? Making the Most of What
You Have, which has been translated into
Spanish and is available via his Web site
(www.johnfoppe.com). You can contact
Foppe by e-mail at seminars
@johnfoppe.com
© 2005 John P. Foppe Seminars, Inc.
43
When to Help Your Child and When to Let Go
by Rick Bowers
I
If you have a child with a limb difference, one of the questions you must ask
yourself is, “How much should I help my child?”
Different parents answer in different ways. Some
cater to their child’s every need and protect
him or her from the outside world in every way.
Others step back and let their child learn to do
things for himself or herself.
Many people with limb differences go on to
live happy and successful lives. They become
doctors, prosthetists, truck drivers, lawyers,
judges, athletes, police officers, firefighters,
nurses, soldiers – you name it. And seemingly
without exception, the ones who learn to do
things for themselves are the most successful.
Life-Changing Moments
44
Many of them, like John Foppe, who was born
without arms, can point to the time in their life
when their parents “saw the light.”
When Foppe was a child, he was dependent
on others until he was in the fifth grade. That’s
when his mother, Carole, decided to get her son
over his dependence on others. She told his
brothers not to help him anymore. They weren’t
to help him dress, get items from the cupboard,
or do anything else.
Foppe recalls lying on the floor sweating,
crying and struggling to put his pants on alone
without arms. He calls it the turning point in his
life. By the time he reached high school, he was
amazingly adept at using his feet for hands.
Now in his 30s, Foppe has a Master’s Degree
in Social Work and is an author and motivational
speaker. He drives, paints watercolors, types,
cooks, and even eats bratwurst and big, greasy
cheeseburgers – all with his toes.
Foppe attributes much of his current
success to his family’s tough love.
“At first, I hated it,” he says. “I didn’t
understand how they could be so
mean.” But now, he says, “I’m eternally
grateful.”
Exceeding Expectations
Expect as much from a child with an
amputation as you would from any
other child, advises Mary Williams
Clark, MD. “Give them chores to do,” she
says. “Work hard if you have to with
their teachers so that they’re not given
high grades ‘because he tries so hard’
or regarded as ‘the poor thing – it’s
hard for her.’ People who do that do
them no real favor.”
Children with limb differences seem
to do better when parents only give
assistance when necessary and don’t
put limitations on them. When parents
expect great things from them and let
them learn to do things for themselves,
they are often surprised at how much
their children can do.
Liz Uchytil, “she was always doing
things for herself. I worried that she
would not be able to crawl because
you need two hands and I was sure she
was going to fall on her face. But, she
taught herself how to crawl.” Uchytil
also surprised her mother when she
became a baton twirler at age 6 and
when she later learned how to type
with speed and accuracy.
the elbow, supports such a view.
“Within reason and with appropriate
accommodation, being treated like
other children is probably best for
amputee children,” he says.
Still, there are many ways parents
can effectively help their children,
Baird explains. “Just like with other
children,” he says, “parents can help
by showing as much love as they can,
“I am one of five girls. My parents claim that the reason that I turned out ‘so good’
was that they never had the time, or the energy for that matter, to treat me any
differently than the other girls.” – Theresa Uchytil, Miss Iowa 2000 Becoming Miss Iowa
Theresa Uchytil (pronounced you-katil), who was born without a left hand,
is a perfect example.
“As Theresa grew,” says her mother,
It was probably even a greater
surprise when Uchytil grew up to
become Miss Iowa in the 2000 Miss
America Pageant, a world champion
baton twirler, and a program manager
at Gateway Computers.
“I am one of five girls,” she explains.
“My parents claim that the reason that
I turned out ‘so good’ was that they
never had the time, or energy for that
matter, to treat me any differently than
the other girls.”
Helping Children Help
Themselves
Pryor Baird, an MD in Psychiatry who
was born without a left arm below
by helping the child find and develop
areas of interest and strength, and by
helping the child adapt to ‘a world of
nonamputees.’”
He explains how his father helped
him help himself rather than do
everything for him. “When I was 6,” he
explains, “my dad, who was an engineer,
did not cut my fingernails but instead
designed a one-handed nail-clipping
device for me. Later, when I was a
medical student at the University of
Virginia, my dad designed a device
that allowed me to ‘percuss’ (tap on) a
patient’s abdomen or thorax – a task
that normally requires two hands.”
45
Rudy Garcia-Tolson (Photo
courtesy of Challenged
Athletes Foundation)
What About Sports?
Let Them Reach for Anything
Parents might be tempted to think, “Well,
yes, my child can study just like anyone
else and excel in school, but he or she
can’t do “rough stuff” like sports.
Consider Rudy Garcia-Tolson.
Garcia-Tolson was born with several
rare congenital birth defects. When he
was 5, the doctors gave him and his
parents a choice: Keep his legs and
stay in a wheelchair or walk with the
help of prostheses. He chose to not only
walk, but to swim and run as well. Soon
after recovering from bilateral knee
disarticulations, he began swimming,
Paddy Rossbach, president and
CEO of the ACA, notes that parents
are pleasantly surprised when their
children or teens with limb differences
return from events they have attended
alone, such as the ACA’s youth events,
because, almost without exception, they
notice a big change in their children;
they have matured, become more
independent, and suddenly realize that
not only are they not alone, but they
are capable of and able to do much
more than they thought. Because of
this, Rossbach encourages parents to
the same way you would treat your
other children. Parents who try to
do everything for their children are
sending the message that they are not
able to do things for themselves.”
She offers the example of one of the
ski camps she ran. “It included four
6-year-olds away for five days for the
first time without their parents,” she
says. “Not only did they all learn to ski,
but they learned to put on their own
prostheses! They returned home full of
things they could do.”
It is also very important, she
says, for parents of children with
limb differences to learn from other
parents who have faced the same
situation. Support groups, she notes,
are excellent for people to meet and
discuss issues of common interest in
a relaxed atmosphere. Hearing how
other parents have learned to cope and
let their children “fly” will enable them
to open the door to a brighter future
of independence for their child. (See
“Within reason and with appropriate accommodation, being treated like other
children is probably best for amputee children.” – Pryor Baird, MD in Psychiatry
46
earning 43 ribbons and 14 medals in
two years. When he decided to take up
running, he entered competition with
athletes of all abilities with the use
of prosthetic feet. At the age of 10, he
was the youngest bilateral amputee to
complete a triathlon.
In 2003, he was selected as one of
People magazine’s 20 teens who will
change the world. Now just 17, he’s
competed in several triathlons. He’s
carried the torch for the 2002 Olympic
Winter Games. And he’s broken
numerous records on the track and in
the water, including the world record
for the men’s 200-meter Individual
Medley swimming event at the 2004
Athens Paralympic Games where he
also won a gold medal.
encourage their children to reach for
anything even if it seems impossible.
“They will never know unless they try,”
she says.
“People with disabilities need to
be stronger and more confident
than those without if they are to
compete with their able-bodied peers,”
Rossbach says. “This is why I stress
the importance of ‘letting go’ of one’s
child with a disability as quickly as
possible. By letting go, I mean let them
be independent, deal with situations
and do things for themselves. This will
give them a sense of achievement,
boost their self-confidence, and prepare
them for some of the situations they
will inevitably face in life. Probably
the best advice is to treat this child
pages 32-35, or contact ACA for a list of
support groups or camps in your area.)
Jim Abbott, a famous one-handed
major-league baseball pitcher, once
said that he will always be thankful that
his parents never allowed him to use
his lack of a hand as an excuse. Yours
will probably be thankful too.
Courtesy of Jim Abbott (www.jimabbott.info)
Rehabilitation: learning to live again
A Step Ahead Prosthetics & Orthotics • Advanced Prosthetics & Orthotics of America • Center for Orthotic
and Prosthetic Care • Certified Limb and Brace • College Park Industries • Leimkuehler O&P Center, Inc.
Nascott Rehabilitation Services • Northern Orthopedics • Orthotic & Prosthetic Design, Inc.
Otto Bock HealthCare • Progressive Orthotic & Prosthetic Services, Inc. • Sunrise Medical
Wound and Skin Care
W
Wound care involves multiple phases. Here, we will review two phases of the
recovery process, talk about the goal of each phase, and discuss your role
in managing your surgical wound and the skin of your residual limb.
Phase 1: Preclosure of the
Residual Limb
The goal of wound management during this
phase is to promote healing of the underlying
soft tissue and to treat or reduce the risk of
infections. In some instances, a drainage tube
is inserted to remove fluids and aid in tissue
repair. A member of your surgical team will do
the dressing changes.
Your role in wound management during this
stage includes the following:
48
1. Keep your wound clean and dry. Notify your nurse if your dressing becomes soiled or you
notice any leakage of drainage.
2. Wash your hands if you come in contact with
drainage. Hand soap and hand sanitizers are
available in your room.
3. Make sure everyone who comes in contact with
your wound wears gloves and washes his or
her hands before and after a dressing change.
4. In some instances, visitors may need to take
special precautions to reduce the likelihood
of transmitting an infection to others. In
such cases, the nurses will review with you
any special precautions for visitors. We are
counting on you to see that these precautions
are followed.
5. Exercise caution when moving in bed or getting
in and out of bed so that you do not dislodge
any dressings or drainage tubes. Notify the
nursing staff if dressings become loose or
dislodged.
6. Eat a good diet. Tissues cannot heal if they
are not provided with the necessary nutrition.
rehabilitation
Dietary supplements are often
provided in addition to your meals
to ensure that sufficient calories and
protein are available to facilitate the
healing process.
7. Inform members of your rehabilitation
team if you experience pain during
the care of your wound. By working
together, you and your rehab team can
establish a medication schedule that
will minimize your discomfort during
dressing changes.
Injuries that lead to amputation
may also result in skeletal injuries
to remaining limbs. As a result, the
amputee may have skeletal pins and
an external fixator device applied to
maintain bone alignment and promote
healing of fractures. If you have one of
these devices, your role in taking care
of it and your skin will also include the
following:
1. Wash your hands with soap and water.
2. Mix small amounts of sterile normal
saline and hydrogen peroxide in a
sterile container.
3. Saturate a sterile cotton swab
applicator in the solution.
4. Using a circular, rolling motion of the
cotton swab, cleanse the pin sites from
the insertion site outward.
5. Avoid going over previously cleaned
areas with a used swab.
6. Gently push down on the skin with the
swab to prevent skin from adhering to
the pin.
7. Leave the pin sites open to the air
unless drainage is present. If drainage
is present, pin sites can be covered
with sterile gauze.
8. Notify a member of your rehabilitation
team if you notice swelling, redness,
pain, tenderness, or a change in
drainage from any of your pin sites.
Phase 2: Definitive Closure of
the Residual Limb
The goal of wound management during
this phase is to prepare your residual
limb for prosthetic fitting. Initially, you
will have sutures in place to close your
surgical wound. These are usually
removed in approximately 14-21 days.
Your sutures will be covered with
petroleum-impregnated gauze, and
bulky gauze dressings will be applied
to provide additional protection. These
dressings are typically changed twice
daily. Once your sutures are removed,
adhesive strips are applied as the final
stage of your wound closure takes
place. These strips will fall off naturally
in about 5-7 days.
Throughout this stage in your woundhealing process, compression dressings
will also be applied to reduce swelling
and begin shaping your residual limb
for prosthetic fitting. There are two
types of compression dressings: rigid
and soft. Rigid compression dressings
are made from casting material and
will be changed as the swelling in
your residual limb decreases. Soft
compression dressings are initially
elastic bandages applied in a specific
way to reduce the swelling at the lower
portion of your residual limb. These
bandages will need to be reapplied
several times during the day to
maintain proper compression. Members
of the rehabilitation team will instruct
you in the proper application of these
bandages.
Your role in wound management
now includes all of the previously
listed items plus these additional
responsibilities for rigid or soft
dressings:
Rigid Compression Dressing
1. Keep the cast dry. Getting the cast
material wet can weaken the cast, and
damp padding can irritate your skin.
2. Avoid getting dirt or powder inside the
cast.
3. Never stick objects inside the cast
to scratch your skin. If itching
persists, let your nurse know so other
measures can be taken.
team if you feel increased pain or
numbness that may be caused by
swelling or a cast that is too tight.
Elastic Bandage Compression Dressing
1. Do not pull at your sutures even if the
skin around the sutures itches.
team if you notice any tearing or
separation of the sutures.
team if you notice that the skin around
the sutures is red or swollen or if
you notice any pus draining from the
suture area.
4. Rewrap your residual limb several
times during the day (usually at
least 4-5 times) to maintain proper
compression.
5. Obtain new elastic bandages if the
ones you are using become soiled or
lose elasticity.
Directions for Wrapping With an Elastic
Bandage
(Below-knee, below-elbow and aboveelbow amputations)
1. Using a 4-inch-wide elastic bandage,
go over the end of the limb slightly
stretching the bandage.
2. Relax the stretch and secure the
49
bandage by going around the limb once.
3. Increase the stretch and go to one side of the center.
4. Decreasing the stretch, go around back. Go up the other side of the center as you increase the stretch again.
5. Repeat this figure-eight pattern until the end is securely bandaged and then secure the bandage with Velcro or tape.
(Do not secure bandages with pins).
6. If the length below the knee or elbow is very short, you will need to make a similar figure-eight pattern above and below the joint
and then secure the bandage.
1.
2.
3.
4.
5.
6.
(Above-knee amputations)
1. Use two 6-inch-wide elastic bandages. (Bandages can be sewn together.)
2. Wrap around the waist twice.
3. Wrap around the end of the limb.
4. Wrap back around the waist.
5. Wrap around the end of the limb.
6. Wrap around the waist and secure. (This is the anchor for the next bandage.)
7. Take another 6-inch-wide elastic bandage and, similar to the technique used for below-knee amputations, go over the end of the
limb slightly stretching the bandage.
8. Relax the stretch and secure the bandage by going around the limb once, then increase the stretch and go to one side of the
center.
9. Decreasing the stretch, go around back, and then go up the other side of the center as you increase the stretch again. Repeat this
figure-eight pattern until the end is securely bandaged, making sure to bandage all of the way up into the groin area. Secure the
bandage with Velcro or tape. (Do not secure bandages with pins.)
Remember: For best results, you must reapply the elastic bandages whenever they loosen.
1. - 3.
50
4. - 6.
7.
8.
9.
rehabilitation
Wearing an Elastic Shrinker Sock
Using an elastic shrinker sock is another way to reduce
swelling. These shrinker socks can be used alone or in
combination with elastic bandages. If the limb is still very
sensitive, it will be more comfortable to stretch the shrinker
as it is being put on either by using two pairs of hands or an
appropriate-size ring made of a stiff material such as PVC.
3. In one swift motion, keeping the stretch and letting the
material slide from between the thumb and fingers, pull the
shrinker up the limb.
3.
Using Hands
1. With two people using all four of their hands (two can be the
patient’s), put all of the fingers down to the bottom of the
shrinker, thumbs on the outside, spare material scrunched
down, and stretch out until the bottom of the shrinker is
completely flat and stretched out.
4. There should be no gap between the end of the residual limb
and the shrinker.
5. If this is for an above-knee amputee, make sure the long side
is around the hip and the short side is all of the way into the
groin.
1.
2. Place the flat, inside part of the shrinker against the end of
the amputated limb.
4.-5.
2.
51
Using a Ring
Tapping
1. Make sure the chosen ring will slide easily all of the way to
where the shrinker will end on the limb.
2. Stretch the shrinker over the ring until the end is flat.
3. Place the flat, inside part of the shrinker over the end of the
limb and feed the shrinker up the limb until it is as high as
needed.
4. Remove the ring.
1. Tap your residual limb with your fingertips, being careful
not to tap with your fingernails. Gentle tapping over the
suture line is generally allowed even before your sutures are
removed.
2. Over time and once your sutures are removed, you can
increase to a slapping motion using one or two hands.
3. Tapping should be done for 1-2 minutes 3-4 times daily. It can
be done more often if it is found to be helpful in reducing
phantom pain.
Preparing for Prosthetic Training
Tapping
At this point in your rehabilitation, there are four techniques you
can use to prepare your residual limb for prosthetic training:
massage, tapping, desensitization and scar mobilization.
Massage and Tapping
Early massage and tapping of your residual limb will help
you develop a tolerance in your residual limb to both touch
and pressure. Both of these techniques can be performed
through your soft compression dressings and when the soft
compression dressing is off. Additionally, these techniques may
help decrease your sensation of phantom pain.
Massage
1. Using one or two hands, massage your residual limb using a
gentle kneading motion. Initially, be especially cautious when
massaging over your sutured area.
2. Massage the entire residual limb.
3. Over time and once your sutures are removed, you can
increase the pressure to massage the deeper soft tissues and
muscles in your
residual limb.
4. This should be
done for at least
5 minutes 3-4
times daily. It can
be done more
often if it is found
to be helpful
in reducing
phantom pain.
Circular
Movement
Massage
52
Desensitization
Tapping
Desensitization is the process of making your residual limb
less sensitive. If you start with a soft material and progress to
rougher materials, desensitization can help you increase your
tolerance to touch in your residual limb.
1. This technique is done when you are not wearing your soft
compression dressing. It should be done for 2-3 minutes
twice daily and is usually done during bathing times.
2. Initially, start with a cotton ball and gently rub the skin of your
residual limb using a circular motion.
3. When you are able to tolerate it, progress to a rougher
material such as a paper towel.
4. Finally, advance to a terry cloth towel.
5. This technique should be done until you can tolerate gentle
friction from a terry cloth.
Circular
Movement
Circular
Movement
Cotton Ball
Terry Cloth
Circular
Movement
Cotton Ball
Terry Cloth
Desensitization
Desensitization
efore
Scar
ealed
rehabilitation
Scar Mobilization
Showering
This technique is done to keep the skin and scar tissue on your
residual limb loose. Scar adherence to underlying tissue can
be a source of pain when using your prosthesis and can also
cause blistering. This technique is best performed when you are
not wearing your compression dressing.
Permission to resume showering is based on a number of
factors and is highly individualized. Your safety and other
factors, such as the condition of other wounds and injuries,
must all be considered. When you feel ready to resume
showering, the best thing to do would be to discuss the
specifics of your situation with a member of your rehabilitation
team or a peer visitor. You should ask questions about home
adaptation, shower chairs, and any help to get family members
trained on any assisted bathing or cleaning care. (See pages
67-68.)
1. Place two fingers over a bony portion of your residual limb.
2. Press firmly and, without moving your fingertips, move your
fingers in a circular fashion across the bone for about 1
minute. Continue this procedure on all of the skin around the
bone of your residual limb.
3. Once your incision is healed, use this procedure over your
scar moving your fingers in a circular fashion to loosen the
scar area directly.
4. This technique should be done daily when you bathe.
Before
Scar
Healed
Inspection
of Your
Residual
Limb
Scar
Mobilization
Scar Mobilization
Healed
Scar
Healed
Scar
1. Regular inspection of your residual limb using a long-handled
mirror will help you identify skin problems early.
2. Initially, inspections should be done whenever you change
your compression dressing. Later on, most amputees find
daily inspection sufficient for the early identification of skin
problems.
3. Inspect all areas of your residual limb. Remember to inspect
the back of your residual limb and all skin creases and bony
areas.
4. Report any unusual skin problems to a member of your
rehabilitation team.
Toilet
Some of the most embarrassing moments can occur while
getting to or using the toilet. Discuss your options and
limitations with your nurse, or ask your peer visitor for advice
and alternatives. Try to be patient; your new routine will be
comfortable again soon.
53
Inspection of Residual Lining
To Wear or Not to Wear a Prosthesis?
I
by Jon B. Holmes, PT, CP, and Diana Higgins, MSPT
“Is using a prosthesis (an artificial
limb) right for me or my child?”
Before answering this
important question, you
should consider many
factors. Because decisions based on knowledge are best, you might
also want to consult a
specialized rehabilitation team about all of your options and the pros and cons of each.
While a prosthesis will be helpful in some ways,
it may be a hindrance in others. To make the best
choice for your life, you will have to decide what is
most important to you. You can ask your rehabilitation team about your specific situation and any
experiences they have had related to it.
It’s also good to seek out other amputees who
have amputations like yours or your child’s to see
how they accomplish their daily tasks and to find out
whether or not a prosthesis has proved helpful to
them. (For information on certified peer visitors and
support groups, see pages 32-35.)
Things to Consider
54
Some of the things you’ll want to consider are your
or your child’s:
• Cause and type of amputation
• Physical and mental abilities
• Motivation
• Other medical conditions
• Financial situation.
A prosthesis is a tool and will only be useful to
those who have the ability and desire to use it
properly.
Some of the reasons amputees might decide to use
a prosthesis are :
•Its ability to help them adjust
emotionally
•Its ability to help them avoid drawing attention to
themselves if it looks like a real limb
•Its ability to help them achieve advanced levels
of function.
As people mourn the loss of their limb, they also
question their possibilities for a productive future.
Using a prosthesis might offer them some encouragement and help them feel more confident about
their future possibilities.
While men are more concerned with the ability
to walk or improve functionally through the use of
upper-limb prostheses, females are more concerned
about their body’s appearance and often want a
prosthesis that looks like a real limb. Some of the
medical literature has also suggested that complaints of phantom pain (tingling, itching, burning or
shooting pain in the amputated limb) are sometimes
associated with the lack of satisfactory function and
poor body image. Prostheses are available today that
can address each of these concerns.
Amputees’ ability to reach their highest level of
function can also have an influence on their ability to
return to recreational activities and work or school.
For those with the desire and reasonable potential
to use a prosthesis, it’s wise and more cost-effective for them to initiate the process early with their
medical team. Starting early will help them avoid
complications and ensure the highest potential for
recovery. Approximately 70 percent of lower-extremity amputees use their prosthesis full time (putting it
on in the morning, wearing it all day, and taking it off
in the evening).
Some common reasons not to use a prosthesis
are:
rehabilitation
•Lack of mental ability
•Increased energy expenditure
•Pain
•Loss of sensation because the prosthesis is a barrier between the skin and
the environment
•Expense.
If individuals do not have the cognitive ability to use a prosthesis safely, they
should not attempt to do so. By using the
prosthesis wrongly, they could injure themselves or others.
They also need to have the physical ability to use a prosthesis. Because individuals
with high-level or multiple amputations
have to expend so much energy to use a
prosthesis, it often proves not to be worth
the effort. For example, bilateral above-knee
amputees will need approximately 250
times more energy to go a given distance
wearing prostheses than they would have
required with their own legs. The use of
prostheses can, therefore, in some cases,
be so consuming that it negatively affects
the amputees’ life and overall productivity.
If a prosthesis causes them pain that
cannot be alleviated, some amputees might
decide that other options can make their
life more enjoyable. It should be noted, however, that pain from the use of a prosthesis
can often be dealt with through altered fit
or alignment of the prosthesis.
Unfortunately, because a prosthesis must
cover the residual limb, it also greatly diminishes an amputees’ ability to feel things.
For this reason, many people (especially
upper-limb amputees) prefer to use their
residual limb without a prosthesis. Their
ability to feel with their residual limb outweighs what a prosthesis can do for them.
Using a prosthesis can also be costly.
The initial expense of purchasing the
device can prevent it from being an option
for some people. And then there’s the cost
of maintenance and the time and money
required to make many trips to prosthetists’
and therapists’ offices. Because follow-up
care is the key to long-term prosthetic use,
these burdens never stop.
Older Adults
Most amputations occur in older adults as
a result of such problems as diabetes and
peripheral vascular disease (PVD). Unfortunately, these people often have many issues
that affect their use of a prosthesis, including deconditioning, heart problems, lack of
community support, and a lack of knowledge about how to maintain their general
health. About 30 percent or more of these
people will also need further amputation
due to underlying medical conditions. In
some cases, the use of a prosthesis can
cause skin problems that could lead to
these complications.
Rehabilitation following lower-limb
amputation is especially complex, and not
everyone will be able to master the use of a
prosthesis. To function independently with
an artificial limb, older people must have
the appropriate strength, range of motion,
and coordination. A lack of any of these
criteria can put the person at risk for falling
and getting injured. Still, age alone should
not be the only factor used to determine
whether an older person should use a
prosthesis. The person’s general health
status is a much more important criterion.
Many older individuals thrive as users of a
prosthesis.
Children
Children with limb loss present a different
challenge. Their parents will have to deal
with the choice they make, knowing that
the chance of their child continuing to use
a prosthesis is directly related to being
fitted for one early in life. It’s a good idea for
parents to encourage their children to do
everything possible and observe whether
the prosthesis helps or hinders their
progress.
Parents also need to be realistic about
their expectations when judging the usefulness of this tool. Above all, they should
not judge their children on their desire or
ability to use a prosthesis.
Other Options
If you decide not to use a prosthesis, there
are additional options. Upper-limb amputees can often learn to function well using
their other hand, their residual limb, their
feet, and/or assistive devices. Lower-limb
amputees may choose to use crutches or
a wheelchair to get around. Keep in mind,
though, that these tools also have pros and
cons that you should be aware of. (See
pages 65-66, 98-99.)
Whatever you decide, some of the
physical complications that can result from
either choice can be minimized by appropriate physical therapy, exercise, and the
use of orthoses, such as braces, splints and
supports. (See pages 106-109.)
Remember: A prosthesis is just a tool,
and choosing to use one or not, or merely
to use one part time, depends on your personal needs. You must make that decision
based on what is best for you.
For more information, go to the resources
section on pages 125-128 and look under
Prostheses.
About the Authors
Jon B. Holmes, PT, CP,
holds a degree in physical therapy from Texas
Woman’s University
(1979) and a degree in
prosthetics from
Northwestern (1984).
Diana Higgins holds a
degree in environmental
design from Texas A+M
(1997) and a Master’s
Degree in Physical Therapy from Texas Woman’s
University (2005).
55
Getting and Maintaining a Good Socket Fit
for Your Prosthesis
by Raymond Francis, CP
T
The socket is the most important part of your prosthesis. As the connection
between your limb and the rest of the prosthesis, it’s the component that has
the greatest impact on whether the prosthesis is comfortable. A socket that
doesn’t fit well can cause blisters, abrasions and pain. As a result, a
prosthesis with a poorly fitting socket will probably end up sitting in the
closet while you sit in a wheelchair.
56
The process of making a socket isn’t just a simple
matter of making a plastic, cup-shaped device in
the form of your limb. The prosthetist must make a
model of your limb and then make certain modifications according to specific techniques in order
to adequately contain the tissue and allow you
to bear weight comfortably on your prosthesis.
(Remember, the natural, weight-bearing structure
that you once had in that limb is now gone; the
prosthetist, therefore, must be very careful – and
talented – in distributing the pressures that will be
applied from the prosthesis.) And since the limb
is a complex system of bone, tissue and fluid that
changes shape depending on what position it’s in
and whether it’s bearing weight or not, it’s highly
surprising if the prosthetist’s first attempt results
in a perfect fit. The process of getting a good fit
is very thorough, and it may take several hours
before you and your prosthetist are satisfied.
Your prosthetist will devote a great deal of time
and effort to make sure that your socket fits well,
but he or she isn’t the only one involved. You can’t
be a silent partner in the process and hope for a
good result. There are certain things that you must
do in order to get – and maintain – the best-fitting
socket possible.
When your prosthetist is fitting your socket,
he or she will ask you to carefully describe how
it feels. Does it feel tight anywhere? Loose anywhere? Does it hurt anywhere? The better you
explain what you feel and where you feel it, the
better your prosthetist will be able to make the
(Right) Photos courtesy of Ohio Willow Wood
rehabilitation
proper changes.
When you discuss these issues with
your prosthetist, try to avoid saying
things like “I think you should make the
socket bigger in this area” or “I think it’s
too small at the bottom.” What your prosthetist needs is for you to describe the
symptoms with statements such as “I feel
some pinching in this spot” or “There’s
some pressure in this area right here.”
Simply tell your prosthetist how it feels,
and he or she will be able to make an
informed decision about how to fix it.
One thing that might make it a little
tricky for you to describe the fit of your
socket is that it is common for the nerves
in your limb to get moved around as a
result of your amputation surgery. This
can play a trick on your brain. You might
think that you feel discomfort in one spot
when it is actually occurring in a completely different area. One way to work
around this is to avoid looking at your
limb while you describe it because the
area where you expect to feel discomfort
might not be the place where it really
is. Close your eyes or look away and
concentrate on what you’re feeling. If you
point to the area of discomfort without
looking at it, you’ll most likely indicate the
correct location.
Another thing to keep in mind is that
the fit of your socket can be greatly
affected by the amount of fluid that you
retain. If you are affected by water retention due to a medication, your diet or
some other condition, then it is best to
try to have that condition under control
when you are being fit for your prosthesis. For example, if your doctor tells you
to stay away from salty foods, don’t eat a
giant ham sandwich and an order of fries
for lunch if you have a prosthetic appointment that afternoon.
Also, since fluid retention tends to vary
during the day, it’s a good idea to make
your appointments at roughly the same
time of day each time you visit your prosthetist. For example, if your first appointment is scheduled for the morning, try to
schedule all follow-up appointments in
the morning as well so that the volume
of your limb will be fairly consistent each
time.
This daily fluctuation in the size of
your limb is something that you’ll need
to manage long after you leave your
prosthetist’s office with a good-fitting
socket. If you don’t compensate for daily
volume loss, your socket may slip down
your leg, and your limb may move around
inside your socket and cause irritation to
your skin. To prevent these problems, talk
to your prosthetist about how to address
the volume changes when they occur.
One of the most effective ways to
manage volume loss is to apply padding
in the areas where volume has been lost.
Fortunately, many manufacturers offer
gel pads for this purpose. You can easily
apply the pads when volume is lost and
remove the pads just as easily when your
limb returns to its original volume.
Remember, although volume loss can
result in discomfort in the limb, the area
where discomfort is felt is usually not
the area where volume has been lost. A
pad will only be effective if it is placed
on the area where volume has been lost.
For example, for transtibial (below-knee)
amputees, the area most likely to lose volume is the back of the leg, even though
the looseness may be felt on the front of
the leg at the tibia (shin).
Day-to-day volume loss isn’t the only
thing you should keep an eye on. It’s also
important to monitor your weight. If you
gain or lose more than five pounds after
being fitted with your prosthesis, you
should make an appointment to have the
socket fit checked.
If your prosthetist has fitted you with a
socket interface of any sort – a gel liner
or something similar – be sure to check it
every day for wear and tear. Contact your
prosthetist right away if you see any sign
of unusual wear, as this is an indication
that the socket’s fit may have changed.
Remember, the only way your prosthetist will know if something isn’t comfortable in your socket is if you tell him or
her. With the two of you working as a
team, you can achieve – and maintain
– the good-fitting socket that you need
and deserve.
About the Author
Raymond Francis
is a certified
prosthetist with
over 40 years of
experience. He
is the chief
prosthetist for
Ohio Willow Wood.
57
Caring for Your Skin
A
At this phase in your rehabilitation, your amputation should have healed sufficiently and you
may be using a prosthetic device. If so, daily inspection of and care for the skin on your residual
limb is essential for success with your prosthesis. Minor cuts, blisters and rashes can quickly
become more than an annoyance if they limit your wearing of your prosthesis.
Daily Skin Care
1. Every day, or more often if necessary, wash your
residual limb with a mild or antibacterial soap and
lukewarm water. Rinse thoroughly with clean water
to remove all soap.
2. Dry your skin by patting it with a towel. Be sure
your residual limb is completely dry before putting
on your prosthesis. Allowing 15 minutes of air-drying before applying your prosthesis should ensure
that the skin is thoroughly dry.
3. Consult your prosthetist before using moisturizing creams or lotions. Vaseline or petroleum-based
lotions degrade some types of prosthetic liners.
Only use softening lotions when your skin is at
risk of cracking or peeling. If a moisturizing lotion
is needed, it is best to apply it at night or at other
times when you will not be wearing your prosthesis. Do not apply lotions to any open area.
4. If needed, applying an antiperspirant roll-on
deodorant to the residual limb can help you control
odor and perspiration. Do not apply antiperspirant
to any open area.
5. Do not use alcohol-based products on your
residual limb; they dry out the skin and can contribute to cracking or peeling.
6. Do not shave your residual limb; pressure from
the prosthetic socket on “stubble” can cause the
hair to grow inward, become painful, and, in the
worst cases, even become infected. Never use
chemical hair removers on your residual limb.
7. Avoid prolonged soaking in warm bathtubs or
hot tubs because this may cause increased swelling in your residual limb.
Inspection of Your Residual Limb
58
1. Regular inspection of your residual limb using
a long-handled mirror will help you identify skin
problems early.
2. Initially, inspections should be done whenever
you remove your prosthesis. Later on, most amputees find daily inspection sufficient for the early
identification of skin problems.
3. Inspect all areas of your residual limb. Remember
to inspect the back of your residual limb and all
skin creases and bony areas.
4. Look for any signs of skin irritation, blisters or
red marks that do not fade within 10 minutes of
removing your prosthesis. Report any unusual skin
problems to a member of your rehabilitation team.
Daily Foot Care
For lower-extremity amputees, it is important to
maintain the health of your remaining foot. This is
especially important if you have diabetes or if you
have decreased circulation or sensation in your
lower extremities.
Your daily routine should include the following:
1. Wash and dry your foot properly: Use a mild
soap, rinse thoroughly, and dry your skin by blotting or patting, making sure to dry between your
toes.
2. Inspect your foot daily: Check for blisters, cuts
and cracking.
3. Protect your foot from injury: Wear shoes or slippers at all times, and check your shoes every time
you put them on for tears, rough edges or sharp
objects.
Perspiration
Perspiration may increase following an amputation
for a couple of reasons. One reason has to do with
decreased body surface following an amputation.
You may be perspiring the same amount, but it is
concentrated over a smaller body surface. Another
reason is that during prosthetic use, your residual
limb is encased in a completely or partially airtight
socket that does not allow sweat to evaporate. In
most cases, daily bathing and the application of an
antiperspirant is sufficient to control this. If odor
or heavy perspiration continues to bother you,
discuss other available treatment options with your
physician.
rehabilitation
Physical Therapy
Getting It Right the First Time Around
W
by Anne F. Street, Prosthetist, MSPT, CPI, STS
When I was interviewing at different schools
for physical therapy (PT), I was asked how my
Bachelor’s Degree in Education would relate
to the field. I was taken aback by the question,
because during my volunteer experiences, I
had observed the clinicians performing one
of their primary functions – patient and family
education.
As I have expanded my experiences as a clinician in a number of medical settings, I have
continued to perform that same education myself.
I am not there to “fix” my patients; I am there to
teach them how to best help themselves. And, as
Medicare and other insurance carriers continue
to limit the amount of therapy benefits they will
cover, that learning process becomes more and
more valuable. You may only get one chance, so it
is important to get it right the first time around.
What can patients/clients/students do to
enhance their learning during the process of rehabilitation therapy? Here are some suggestions
to help you become a better medical consumer.
Think about how you learn best.
Is it by reading information, by hearing it explained, by seeing it demonstrated, by practicing
it, or all of these? Once you have established
(or thought about) your learning style, talk to
your therapist about which technique suits you
best. Clinicians have numerous books, handouts,
videos, etc. to help you understand and develop
your skill at donning and doffing a prosthesis,
stretching, doing strengthening exercises, and the
like. They should be able to present information
in the way that best suits your individual needs.
Ask questions.
Write them down as you think of them, and bring
them with you to therapy. If you are not sure how
an activity is performed or why it is important to
your rehabilitation, you may not take the time to
do it correctly and will not get the full benefit of
your time in therapy or time spent performing a
home exercise program (HEP). Or, even worse,
you could injure yourself!
Listen to your therapist’s explanations
and the information he or she gives you.
If you do not understand the information, ask him
or her to restate it at a different level and give you
some examples. Some professionals forget that
not everyone has the same medical background
that they do and that they need to put things into
a layperson’s terms.
If he or she is not doing it already, ask
your therapist to watch you perform
your home exercise program (HEP).
Take notes, and take the constructive criticism
to heart. Practice at home, and do the exercises
at least daily. Believe me, clinicians know who
does their HEP and who does not. But, it is not
the clinicians’ loss if the patient is noncompliant with his or her HEP; it is the patient who is
missing out. Doing your exercises only on the two
or three days a week that you have therapy does
you no good and prevents you from progressing
to the new techniques and information that your
therapist has for you.
Your time is valuable. You may have coverage
59
for only three to four weeks of treatment a year. Therefore, you need to get
“the most bang for your buck.” Learn as
much as you can. If you must cancel a
treatment session, ask if you can make
it up that week. If you have trouble
performing the activities by yourself, ask
if your spouse or a friend can come for
a session or two and learn the HEP too.
Most clinicians do not mind as long as it
is beneficial to the patient’s outcome.
Ask your therapist about what
happens when you complete
your formal rehab program.
60
He or she should already be planning for
your transition back into the community.
Remember that your physical rehabilitation is an ongoing process and should
not end when you are discharged from
formal therapy. Ask your therapist if he
or she can recommend any facilities that
might be able to help you, and then go
and check them out.
Many health clubs have discounted
memberships for those who attend
classes or “work out” in the middle of
the day. In fact, some facilities may even
offer the first week free so you can try
them out. Apartment and housing complexes may also have exercise facilities
and pools available for their residents. In
addition, local community colleges may
offer times when their sports complex is
open to the public. Some facilities have
special classes for osteoarthritis, weight
reduction, aquatics, cardiovascular
training, sitting exercises, basic strength
training, yoga, Pilates, etc. Not everyone
who goes to the gym is “pumping iron.”
A lot of exercises can even be performed with elastic bands and a couple
of small hand weights in the privacy
of a person’s own home. And, weather
permitting, why not take advantage of
outdoor walking trails and parks?
Choose an option that is good for you,
see what equipment is available, and
review your decision with your therapist
before you are discharged. He or she
may have some ideas, literature and/or
safety recommendations to help you
make the most of what you have available. A few pieces of simple equipment
can go a long way.
Always discuss changes in your
activity level or diet with your
primary care physician first.
Your metabolism is changed by increased activity, and it can affect how
your system absorbs medications.
Special diet foods and supplementary
vitamins can prevent the absorption of
some medications. And, with certain
medical conditions, some physical activities or increased water intake can make
the condition worse.
Developing good habits early on can
help minimize complications later in life.
By understanding the importance of
elevating the residual limb and wearing
a shrinker to reduce edema, the importance of exercising regularly to keep the
knee and hip joints strong and flexible,
and the importance of performing skin
checks before and after you wear your
prosthesis to prevent skin breakdown, a
good student can reduce the chance of
his or her prosthesis not fitting properly,
fatigue, falls, and skin problems.
Having the energy, strength and endurance to do things is important to all
of us. Instead of being a passive receiver,
be an active participant in your life and
your therapy. You will have a better experience, better outcomes, and a better
quality of life for it!
About the Author
Anne F. Street,
Prosthetist, MSPT,
CPI, STS, received
her Bachelor’s Degree
in Sociology and
Education and her
Master’s Degree in
Physical Therapy. She is also a certified
Pilates instructor, has a certification as a
strength training specialist, and recently
completed the California State University
at Dominguez Hills’ Prosthetics Program.
She is practicing in Melbourne, Florida,
at Brevard Prosthetics, Inc.
Tips for Preventing
Leg and Back
Problems in
Prosthesis Users
1) Be sure that your prosthesis fits correctly at all times.
2) Be sure your prosthesis and
sound limb are of equal height,
and don’t have your prosthesis
shortened.
3) Walk with an equal width of walking base, and don’t favor one leg.
4) Don’t hop excessively on your
sound limb when you are not using your prosthesis. Use crutches
around the house when you are
not wearing your prosthesis.
5) Stand with equal weight distributed between your limbs, and avoid
favoring one limb.
6) Maintain good posture during
sitting and standing.
7) If pain is present, use a cane to
reduce excessive stress to your
knee or back.
8) Maintain a nutritious diet and retain your appropriate body weight.
9) Exercise regularly, incorporating a
strengthening, stretching and cardiovascular endurance program.
10) Maintain a regular appointment
schedule with your doctor, pros-
thetist and physical therapist.
About the Author
(See page 16.)
rehabilitation
Living With a Limb Difference
8 Keys to Success
I
by Anne F. Street, MSPT, Prosthetist, CPI, STS
I have worked as a physical therapist in an inpatient rehabilitation
hospital for 14 years, and I specialize in the treatment of patients with
limb differences. During this period, I have had the opportunity to talk
to numerous amputees and to ask them what they learned after surgery
that had a positive impact on their life. The following tips summarize what
I have learned from these individuals and what I now teach my patients.
They are important keys to living successfully as an amputee.
1. Talk to the members of your
healthcare team
Keep your physician, nurse practitioner, physician’s assistant, etc. informed of any changes in
your activities, diet, pain, residual limb or emotions. What may seem insignificant to you may be
important to them, especially during the period
shortly after your surgery. If the members of your
healthcare team catch a problem early, they may
be able to solve it with minimal pain and expense.
2. Establish attainable goals
Don’t expect to be “leaping small buildings in a
single bound” the first week after your surgery.
With the help of your rehabilitation team, set
smaller, achievable goals on a day-to-day basis
that will help you eventually achieve larger, more
complex goals on a week-to-week basis. Early on,
for example, you might work on safely performing
sit-to-stand transfers as a component of preparing to walk to and from the bathroom independently. Then, as your strength and abilities
improve, you can change your goals accordingly.
Discuss these goals with the members of your
healthcare team; they should be able to tell you
what is reasonable.
3. Develop new habits
Try to establish new routines for the care of your
residual limb and prosthesis. It takes two to three
weeks for an activity to become ingrained as a
habit. Performing the same activities in the same
way at the same time of day should help you develop patterns of activity that you will continue to
61
perform regularly with minimal thought
and effort. At the same time, these habits
could have a profound impact on your
life. For example, performing skin checks
before donning and after doffing your
shrinker and/or prosthesis can help
prevent skin breakdown problems. This
can help you minimize skin injuries
that could cause you severe pain,
prevent you from using your prosthesis,
limit your mobility, and even lead to
life-threatening infections. If you have
diabetes, preventing such injury is especially important.
4. Do your exercises!
The benefits of an established exercise
program are endless and include improved circulation, endurance, strength,
weight control, flexibility, balance, emotional outlook, independence, and overall quality of life. Take the time to learn
and perform your exercise program.
Then, talk to your therapists to find a
way to maintain your program after you
are discharged from formal therapy.
(Caution: Always check with your physician before beginning a new fitness
regimen.)
5. Be careful about your position
If you maintain the same position, such
as sitting in a chair, for an extended period of time, your body will start to conform to that position. Your muscles and
62
David Franke, a student in medical school,
makes time to participate in weekly Pilates
sessions for flexibility and core strengthening with his certified instructor, Laura
Rauch.
tendons will shorten, and pretty soon
you won’t be able to straighten them.
This situation is called a contracture.
To prevent or limit contracture
formation, it is important to periodically stretch in the opposite direction
of a maintained position. Lying on your
stomach for 15 to 20 minutes a day, for
example, can help you minimize hip
flexion contractures caused by excessive sitting.
6. Practice energy conservation
Taking a break in the middle of the day
can allow you to be more productive
later in the afternoon. If you separate a
larger project into two or three smaller
activities with rest periods in between,
you will still get the job done but will
not be exhausted when you finish it. If
you have long distances to traverse, you
might use a manual or power wheelchair
to help cover the distance so that you
will have the energy to enjoy dinner
when you get there.
Look at your daily activities, and see if
they can be modified to make them easier and you more efficient. Even though
you use leg prostheses, for example, you
might do some things around the house
in a wheelchair so that you will have the
energy to wear your prostheses when
you go outside. If you have bilateral
lower-limb amputations, you might make
your bed while sitting on it without your
prostheses so that you don’t have to
walk around it with your prostheses on.
This can help you conserve your energy
for later in the day.
7. Realize that you are not alone
Become involved in a local peer support
group. Don’t reinvent the wheel; instead,
learn how other amputees have solved
problems and are dealing with issues.
Support groups can provide information
on community resources for transportation, funding, prostheses, equipment,
home renovations, etc. Many groups are
open to spouses, friends and significant
others. (See pages 32-35 or contact
the ACA for a list of support groups in
your area.) Also, talk to your family and
friends about your concerns and goals.
They won’t know what’s going on unless
you tell them and involve them.
8. If you smoke, quit!
The vaso-constrictive effects of a single
cigarette can last for up to two hours
after you have finished smoking it. This
reduces blood flow and the delivery of
oxygen to your extremities and healing
tissues. This effect is magnified if you
also have diabetes or vascular disease.
Talk with your physician about safe,
effective methods to help you kick the
habit.
About the Author
(See page 60.)
rehabilitation
Using the Gluteus Medius
to Improve Your Gait
A
by Ivan Long, CP(E)
Are you an above-knee amputee? Do you walk with a side-to-side
motion of your upper body and head?
If you answered yes, you should learn about one of the muscles that
connects the thigh bone (femur) to the pelvis. This muscle is the
gluteus medius. Proper functioning of this muscle can help you improve
your gait.
Illustration 1
shows a side view
of the hip joint. The
ischium (the bone
you sit on) and the
gluteus medius
are also shown.
When this muscle
works properly,
it helps support
the upper body.
The head moves
forward without
shifting to the side
Illustration 1
when you walk.
Without gluteus medius support, the entire upper
body moves over to the side for balance when
you are walking. This causes a side-to-side motion of the upper body that other people notice.
When the femur of the amputated limb is
pointed away from the middle of the body, the
gluteus medius acts as if it is paralyzed. The
muscle cannot work because it is not properly
stretched between the attachment points.
The X-ray in Illustration 2 was taken with the
patient standing in his prosthesis. The outside
wall of the prosthesis was not properly shaped to
provide support for the femur in the normal position. So, the femur points away from the midline of
the body.
The outside wall of the socket in Illustration 3
is also improperly shaped to support the femur
in a normal position. This will cause the same
problem.
Illustration 2
Illustration 3
63
64
Illustration 4
shows a prosthesis
with an outside
wall that supports
the femur in the
proper position.
This allows the
gluteus medius to
work normally.
The X-ray is an
excellent tool to
check the angle
of the femur. It
ensures that it is
properly supported. These
are things that I
believe are necessary to properly
fit an above-knee
amputee.
It is possible to
check for gluteus
medius function
with the followIllustration 4
ing exercise. Do
this with a nonamputee first. Have the
person stand with his or her feet about 1
to 2 inches apart. Place your fingers on
the sides of his or her pelvis and feel the
muscle activity as you move the body
from side to side. When the body moves
to the right, the gluteus medius “fires”
on that side and relaxes on the opposite
side. When you move the body to the
left, that side has muscle activity, and
the right side relaxes. Notice how little
movement is required to initiate muscle
activity.
Now have the person walk forward
while you have your hands on both
sides of his or her pelvis. Notice the
slight shift of the pelvis over the weightbearing foot and feel the activity of the
gluteus medius. Also, feel the opposite
side relax. On many people, you can see
that hip go down. Also, note the absence
of side-to-side movement of the upper
body.
Now have that same person move a
foot out to the side about 6 inches. See
how far he or she must shift before the
gluteus medius activates. Actually, that
shift moves the femur into a normal
position and allows the gluteus medius
to work properly. No two people walk
exactly the same, but that basic pattern
is always present.
Equal functioning of the left and
right gluteus medius is important. This
is especially true if you are an aboveknee amputee who wears a prosthesis.
For this to happen, several factors are
important.
• Both limbs must be the same length
to ensure a level pelvis and equal
muscle activity. A short limb always
affects the gluteus medius. This causes
side-to-side motion of the upper body.
• The foot and knee of the prosthesis
must be properly positioned. You
should be able to bring the femur in to
a normal angle without contact with the
opposite foot or knee.
• The femur must be comfortably
supported by the outside wall of the
socket. It should maintain a normal angle.
This provides protection for the end of
the femur when weight shifts to the amputated side. This well-supported femur
will provide a positive link with the floor.
You will feel stable with the feet close
together.
• The ischium (the bone you sit on)
must be contained inside the socket
(ischial containment). This prevents
the socket from shifting when the femur
presses against the outside wall of the
socket.
• The hip on the side that is not
bearing weight must not be elevated.
You must practice using the gluteus medius for support on your weight-bearing
side. Do this while moving the opposite
foot forward without elevating the hip.
Walking in front of a mirror with your
hands on your hips to feel muscle activity with your fingertips is an excellent
way to practice.
Follow these simple suggestions. You
should improve your overall gait and
walking comfort.
For questions or comments about this
article, please contact Ivan Long by
e-mail at IvanLongCP@aol.com or write
him at Ivan Long, 3445 Miller Street,
Wheat Ridge, Colorado 80033.
About the Author
Ivan Long,
CP(E), has
been working
with amputees
for over 50
years. Though
he is now
retired from
actively building limbs, he
continues to
share his experience with prosthetists,
students and amputees.
rehabilitation
How Can I Do This?
Challenges for Upper-Limb Amputees Require Ingenuity
by Rick Bowers
I
If you are missing one or both arms, you are missing something that most people
rely on every day for seemingly simple daily tasks. As such, you can struggle to find
ways to accomplish these same tasks in other ways or you can turn to other arm
amputees who are willing to share their solutions.
Jessica’s Tips for Dressing
1. Consider using pants, skirts and shorts with
elastic waistbands instead of buttons.
2. To put on these clothes, use a dressing hook or
dressing knob that can be stuck on a wall or
door either permanently or temporarily with an
attached suction cup.
Jessica Cox writing in college with her foot.
Photo courtesy of www.rightfooted.com
Flexibility and Balance
Though Jessica Cox was born without arms, she
has completed her Bachelor’s Degree in Psychology, she has two black belts in tae kwon do, and
she is now learning to fly airplanes..
Jessica learned from an early age to use her feet
as her hands. Because she says arm prostheses
can be cumbersome and are limited in what they
can do, she recommends that bilateral arm amputees who decide to use them also learn how to do
things without prostheses.
She also encourages other arm amputees to stay
physically fit and flexible so that they can use their
feet to accomplish tasks. Her own flexibility has
been one of the keys to her ability to write and type
with her feet, to put her contacts in her eyes with
her toes, to drive her car, and even to buckle her
seatbelt with her feet.
Balance is a second key, she says. When she was
3 years old, her mother enrolled her in gymnastics, and, at 6, she began taking tap dance classes.
These helped her develop excellent flexibility and
balance so that she can stand on one foot and use
her other foot as an arm.
3. When using one with a suction cup, attach it to
the wall/door at waist level by using one of your
feet while standing on the other.
4. Pick up the clothing item with your foot and hang
it on the hook/knob. Hang it at the area where
the back belt loop would be.
5. Step into your hanging clothes and work your
way into them. The hook/knob should be at hip
level so that once you have stepped into your
clothes, you can squat to wiggle into them.
Independence Away From Home
John Foppe, who was also born without arms, is a
well-known motivational speaker who travels all
over the world to deliver seminars. As a result, he
has had to learn to do things for himself, especially
while traveling.
John’s Tips
Socks – If you want to use your feet as hands,
consider wearing Japanese Tabi socks that you can
purchase on the Internet. These socks are not thick,
and the big toe is separated from the other toes
(They look like mittens for the feet). While wearing
these socks, you can use your big toe like a thumb
to help you pick up and hold things.
Using the Restroom – Consider using pants with
65
A Technique for Many Occasions
A simple technique that can be used by
arm amputees in many situations is to take
an object that people would normally hold
in their hand (a brush or cleaning pad, for
example) and mount it on the wall.
Once a hairbrush is mounted, you can
rub your head against it to brush your
Photo by Rudi Williams
expandable waistbands. Then, instead of a
belt, you can use elastic suspenders that
have large, strong metal clips that won’t
easily slip off the pants. (I use beige or tan
suspenders because they blend in with
my skin and can be worn under a thin
shirt if desired.)
The suspenders allow me to use the
restroom independently. While standing,
I grab the bottom of the pant leg with my
toes and pull the pants down. The suspenders stretch with the tension. I don’t
wear underwear. After using the restroom,
the stretched suspenders retract, pulling
the pants up. (Caution: If you plan to travel,
you might want to use airport-friendly nometal suspenders.)
Courtesy of Department of Defense
hair without hands. Similarly, you can
hang a large pad on the shower wall and
rub against it to clean your body.
A similar concept is used by arm amputees for cooking. You can, for example,
have several nails driven through a cutting
board. Then, with the sharp ends pointed
upward, you can push a tomato or other
food item onto the nails to hold it firmly so
that you can cut it.
Technical Solutions
Some tasks are more difficult, however,
and require technical solutions.
Tools, such as knives, forks, wrenches and
screwdrivers, are made to be held in a hand,
and even if a bilateral upper-limb amputee
uses prostheses, he or she will probably
have a difficult time using and controlling
some of these items.
The N-Abler (now the N-Abler II) was
invented to solve this problem. This device
can easily be attached to the end of a prosthesis in place of an artificial hand or hook,
enabling numerous specially made tools to
be firmly attached to the prosthesis. (This device does not permanently replace the hook
or hand; rather, it is a temporary addition to
them.)
In some cases, the company that makes
the N-Abler II will also produce custommade tools for special tasks.
Contributors
Jessica Cox, BS, is a motivational speaker.
(www.rightfooted.com)
John Foppe is a professional speaker and the
author of What’s Your Excuse? Making The
Most Of What You Have (Thomas
Nelson Publishers, 2002). www.johnfoppe.com
Support the ACA
through membership!
You’ll receive ACA’s award-winning magazine inMotion
and have the satisfaction of knowing you are a part of
something that is changing peoples’ lives.
Becoming a member is easy.
888/AMP-KNOW (267-5669)
www.amputee-coalition.org
66
®
rehabilitation
Grooming, Bathing and Safety Tips
T
by Bill Dupes
The bathroom is one of the
places in your home where the
ability to do things independently
is extremely important. While in the
bathroom, most people want to be
alone if at all possible.
Showering, bathing, shaving, brushing your hair,
brushing your teeth. Though these are activities
that many take for granted, people with limb differences can find them very difficult to do alone. Your
daily grooming routine is made up of movements
that require hand and wrist dexterity and flexibility,
arm extension and rotation, balance, strength and
coordination. When these movements are difficult or
painful, grooming can be frustrating or even risky
without the aid of assistive devices.
Unfortunately, because assistive devices for
independent living are produced by only a small
number of manufacturers for a small market, they
can be expensive. Moreover, Medicare does not
cover the cost of bathing equipment, including bath
seats, hand-held shower heads and grab bars.
With thought and ingenuity, however, you can
find ways to do these activities with homemade or
easily available and inexpensive aids. You shouldn’t
neglect safety for convenience, however. More
accidents happen in the bathroom than in any
other room in the house. In fact, the U.S. Consumer
Product Safety Commission reports that more than
110,000 accidents occur in bathtubs and showers
annually.
Get a Grip on Your Dental
and Hair Care
Prosthetic hands and hooks often do not grip small
or thin items as well as the human hand does. As
a result, these items might be difficult to control or
might slip out of your prosthesis. A simple, low-cost
solution is to add thicker, less slippery handles to
such items as your toothbrush, comb, hair brush,
bath brush and flossing device.
If you can’t find these items with ready-made
built-up handles, you can make their handles larger
and easier to grip by wrapping them with a short
section of foam rubber tubing. Or you can simply
insert some of the items into a bicycle handle grip.
Also, if your prosthetic device has a limited range
of motion and you can’t quite get to those hard-toreach spots with your bath brush, try attaching it to
a wooden dowel or a flexible wire.
An easy technique for brushing your teeth without arms is to use a battery-powered toothbrush.
If you can get toothpaste on it, turn it on, and get it
in your mouth, you can use your mouth to move it
around inside, letting the vibrating toothbrush do
the rest.
Flossing with the traditional string-style floss
would clearly be difficult for a one-handed person.
Today, however, a one-handed person can take
advantage of the newer “tuning fork” flossing tools,
which do not require two hands.
If you have no hands and normally dry your hair
with a hair dryer, you can mount it on the wall and
simply move your head around in front of it until
your hair is dry. The bracket that holds the dryer
should allow movement, however, so that the dryer
can be tilted in various directions.
When it comes to shaving, an electric rotary
razor is much kinder and gentler than a blade. Flexible-headed razors require less hand movement to
reach awkward places and are often bulky enough
to use with a prosthesis.
If you use a wheelchair at the sink, any
67
exposed pipes underneath should be
wrapped to avoid burning your legs.
Whether you’re seated or on your knees
in a locked wheelchair, a folded towel or a
thin pillow on the front edge of the counter
will make long periods at the sink much
more bearable.
Finally, you’ll probably like to look at
yourself in the mirror to make sure you
don’t leave toothpaste on your chin or unknowingly leave the house with “bad hair.”
Two simple ways to make sure that you
have access to a mirror where you need it
is to install a full-length mirror or to mount
a magnifying mirror in a convenient location, preferably next to an electrical outlet.
Grab Bars
Grab bars help support you while you are
getting in and out of the bathtub, reducing
your risk of a fall. They can be installed
on the walls or on the side of the tub.
Wall-mounted grab bars, when installed
properly, are considered more stable than
tub-mounted bars. Tub-mounted bars
don’t require structural support from a
wall and have the added advantage of
easy removal, but they must be used with
caution because they can easily (and suddenly) detach if fastened incorrectly. Test
them carefully in advance by applying
force in several directions before relying
on them for support.
Although they come in different shapes
and sizes, grab bars have common safety
characteristics and requirements. Flanges
on the ends of the bar should have sturdy
screws for installation, preferably into
wall studs. There should be enough room
between the bar and the wall for you to
get a good grip. They should be made
of plastic or rust-resistant metal, with a
rough surface to prevent slipping.
Bath Seats
68
A bath seat or transfer seat can help if you
have difficulty with your balance. A waterresistant chair or bench is ideal because it
allows you to sit at a normal height while
washing. A bench that extends to the outside of the tub will enable you to sit down
on it first and then slide to the inside. You
can also use a regular plastic camper seat
or patio chair, preferably with openings in
the seat to allow drainage. Nonslip pads
or sections of rubber hose glued to the
feet of the chair will help to stabilize it and
protect the tub enamel.
If you want to fly solo, you might try
getting into the tub by sitting on a corner
edge, leaning against the side wall for
support, turning slightly and placing your
feet one by one into the tub. Reverse the
procedure to get out. Draping a wet towel
over the side of the tub helps prevent slipping when you are getting in and out. A
bench or chair placed beside the tub can
be helpful, too (you might have to cut the
legs so that the seat matches the height
of the tub). A rubber mat on the side of
the tub may also help to prevent slipping
during transfer.
and rubber-based linoleum have better
slip-resistance. Keep the floor clear of rugs
or small objects on which you could slip
or trip, and use cleaning products that
don’t leave a slippery film.
Keep Things Handy
Go With the Flow
Bathing is easier if everything you need is
close at hand. If you bathe in a tub rather
than showering, you can buy or make a
shelf to sit firmly on the edges of the tub to
hold soap, brushes or a magazine.
A more flexible option is a wire-frame
shower caddy with suction cups that can
be attached wherever you wish. You can
also find a variety of rings and hooks to
add more items to the caddy; the classic “soap-on-a-rope” is always handy,
and some squeeze bottles of soap and
shampoo are designed to hang on a hook
as well. Other soaps and shampoos are
available in pump dispensers.
Slippery When Wet
A common problem for amputees is
maintaining balance while bathing and
climbing in and out of the bathtub. Most
tubs don’t have adequate slip-resistant
finishes. To reduce the chance of a slip injury, your bathtub floor should have either
a rubber mat anchored with suction cups
or nonslip adhesive strips. Bath strips
should be placed close to each other so
that very little of the tub floor comes in
contact with your foot.
Various floor materials respond differently to being wet. Some new ceramic tiles
Scalding is another hazard of showering. Always check the water temperature
before you get into the shower. This is
particularly important for people with
diabetes. Diabetic nerve damage can
leave your feet numb and unable to feel
heat, cold or even pain. And if you can’t
feel pain, you might not notice any blisters
until you have an infection.
You might want to try one of the many
hand-held shower heads on the market,
particularly if you shower in a seated
position. Handheld units also allow getting
into the tub without stepping directly into
a stream of water, reducing the chance of
slipping. Some models are made of rubber
to fit over the tub tap, while some require
installation but allow more freedom of
movement. Make sure you can reach the
mounting bracket from your seat and that
the hose is long enough for you to spray
all parts of your body. The handle should
be easy to grip, and any knobs or controls
should be easy to use (even when wet).
For more ideas, consult an occupational
therapist or independent living specialist.
These professionals can recommend more
assistive devices and methods to help you
perform your daily activities.
rehabilitation
Working With an Occupational Therapist
to Get Back Into the Work Force
U
by Sean Toren
Upper-extremity amputations present a host of issues for those who wish
to return to the work force. Whether you are about to have amputation
surgery or have recently become an amputee, however, there are certain
steps you can take to improve your chances of returning to the work
force successfully. In fact, even if you’ve been an amputee for a long time,
you may find that there are new technological and medical solutions that
may help you do things that you didn’t think were possible.
Amputee Janet Bombard participating in a seminar designed to educate occupational therapists about
the rehabilitation needs of amputees
Being Part of the Team
Preoperative Phase
Your healthcare team will probably include your
surgeon and possibly a nurse, a prosthetist who
will fit you with a prosthesis, and an occupational
therapist (OT) to help you prepare and use your
prosthesis. You may also have a worker’s compensation case manager if your amputation was
job-related and a licensed clinical social worker
or therapist if you’re struggling emotionally. But
don’t forget that you are on this team too. In fact,
your own education about this process and your
understanding of what you need are vital to your
obtaining the best possible results.
If you have the chance to meet with an OT
before your surgery, he or she will evaluate your
strength and range of motion and may recommend therapy right away to strengthen necessary areas so that you’re better prepared to use
your prosthesis once you’ve been fitted. Some
OTs are also well-educated about prosthetic
solutions and will work with your prosthetist to
ensure that you can use your prosthesis as well
as possible.
69
Postoperative/Preprosthetic
Fitting Phase
After you’ve had amputation surgery,
you’ll meet with an OT — and possibly
a prosthetist — to prepare you for your
prosthetic fitting. The OT will begin (or
continue) strengthening and range-ofmotion therapy. The range-of-motion
therapy is especially important at this
stage because you don’t want to lose
the strength and flexibility you have. In
fact, you may need even more strength
and flexibility after your amputation to
be able to use your prosthesis as well as
possible.
Your OT will also teach you how to
wrap your residual limb to control swelling and to help shape and prepare your
residual limb for the prosthesis. In addition, he or she may help you manage
any scarring on your residual limb.
This is a good time to discuss your
functional goals for home and work
and learn how you, your OT, and your
prosthetist can work together to achieve
these goals, whether through a prosthesis or adaptive equipment.
After Your Prosthetic Fitting
70
Once you have been fitted with your
new prosthesis and have learned how to
care for it and your residual limb, you’ll
begin the process of “functional training”
with your OT. The number of sessions
you have may depend on your health
insurance and worker’s compensation
policies in your region and can run
from a few days to a few months.
What you’ll learn to do — and how
successful the process will be — will
depend on your own discipline and
motivation along with the support and
expertise of your OT.
Functional training starts with learning how to use your prosthesis by picking up objects of different shapes and
densities and manipulating objects on
peg boards. Once you’ve mastered such
activities, your OT will start working on
Activities of Daily Living — the things
you need to be able to do to live your
life. If you want to work on a computer,
golf, or drive a car, talk to your OT about
what strategies can help get you there.
Such strategies may come in a variety
of forms, such as learning to type with
one hand, diligently practicing with your
prosthesis, or using adaptive equipment. Adaptive equipment includes such
things as a button hook for dressing, a
slant board for writing, and special tools
or adapters that attach to your prosthetic socket. Your OT is a great resource for
strategies to help you, but you may also
find help through mentoring groups and
peer networks.
Getting Back to Work
If you’ve had a job-related accident,
you may speak to a case manager at
this point about returning to the work
force. Depending on which state you live
in, worker’s compensation may pay for
vocational rehabilitation. If you receive
vocational rehabilitation training, your
OT will probably work with your case
manager to create a plan for getting you
back to work. You’ll need to discuss
whether you want to and whether you
are able to go back to your old job and
what other job opportunities you might
have. Your OT can help simulate on-thejob environments and determine if you
need to do any extra training or if you
need any adaptive devices to do your
job. He or she may even accompany you
to work to perform an on-site evaluation
of your work environment and to assess
the demands made on you there. (See
pages 71,78-84.)
While some jobs require little extra
training, your amputation level or the
physical characteristics of your job
may require you to develop job-specific
strength and endurance. Such training
is called “work hardening” and generally
involves a program designed by your
OT that can last anywhere from a day to
several months. The goal of work hardening is to give you the tools you’ll need
to succeed — and possibly to set limits
on how much work you can do.
Teaching an Old Amputee
New Tricks
If you were fitted with a prosthesis years
ago, you may find that you’re having use
problems as you get older, especially if
you’re wearing a body-powered prosthesis. If so, it might be a good time to contact your prosthetist or OT. If you don’t
have a prosthetist or OT, ask your family
physician for recommendations. It’s
important that your prosthetist is aware
of recent advances in upper-extremity
technology. If you get the appropriate
technology along with proper training
from an OT, your chances of successfully
going back to work rise dramatically.
About the Author
Sean Toren is the technical communications manager at Otto Bock HealthCare.
rehabilitation
Occupational Therapist and Prosthetist
Help Firefighter Return to Work
F
by Sean Toren
Firefighter Luis Nevarez knows a lot about motivation to get back on the job. Called out for
a downed power line in January 2002, Nevarez accidentally touched a hidden 12,000-volt
line while breaking the limb off of a smoldering tree.
“Honestly, at first I was afraid he wasn’t
going to survive,” says Tulare, California,
Fire Chief Michael Threlkeld (Nevarez’
boss). “We knew we needed to keep
his spirits up. So when one of the first
things he said was that he wanted to
come back to the department, we did
everything to support him.”
Firefighters from his own and neighboring engine houses maintained a constant vigil as Nevarez underwent nine
surgeries, including many skin grafts to
heal his burns. And when he was ready
to go home, his department picked him
up in the very engine he’d gone out on
the day of his accident.
Coming Back
Nevarez worked diligently with his
occupational therapist to build up his
strength, and he also went to the gym
on his own, taking ankle straps for the
leg weight machines and slipping them
over his residual limb to train. Nevarez
knew he needed to get in incredible
shape to pass the tests to become a firefighter again – tests that demand power,
endurance and quick action.
When it was time for him to be fitted
with his body-powered prosthesis, his
OT accompanied him to his prosthetist
to help find the best solution for him.
Nevarez also brought along some of the
equipment he’d have to work with as a
firefighter, and his prosthetist focused
on creating a prosthesis that was rugged and precise enough for the work
Nevarez hoped to be doing again.
After he was fitted with his prosthesis, he returned to light duty at
the fire house, but it was still his
goal to return to active duty, and
he began training for fire situations
with other firefighters.
Work Hardening
“We as a department had to
determine testing criteria for him,”
says Threlkeld. “We figured that if
he could do what a probationary
firefighter could do and pass the test,
then he’d satisfy the requirements.”
Firefighters have to do a lot, including hauling, connecting and operating
hoses, climbing ladders, driving rescue
vehicles, and operating the “jaws of life.”
Normally, firefighters use certain
techniques to perform such tasks, but
Threlkeld and his team decided not
to put limits on how Nevarez did what
he needed to do. “We never put up a
roadblock,” Threlkeld says. “All we had
to do was provide the pathway. He had
to do all the work, and he met every
challenge.”
Nevarez worked with other firefighters
to discover new techniques for doing
things. Most firefighters, for example,
connect hoses with two hands, but
Nevarez learned to do it by holding one
side with his forearm. He also learned to
operate the 50-pound “jaws of life” tool in
a similar way, using one of his legs to do
the work his left hand used to do.
On the day of his test, 364 days after
his accident, Nevarez “passed with flying
colors” – but he didn’t do it alone. He
credits his prosthetist and occupational
therapist, as well as his fellow firefighters, for helping him train and find
specific solutions to perform his duties.
To help him even more with his job,
Nevarez was fitted with a myoelectric
prosthesis with two interchangeable
terminal devices, including an electric
gripper that generates a stronger pinch
than his body-powered split hook.
Since his return to duty, Nevarez has
won numerous awards, including the
“Purple Heart” at the California State
Firefighters’ Association Conference.
He’s also been speaking with other amputees to motivate and encourage them
to keep moving forward.
“Luis took something that was a near
tragedy and turned it into a positive
experience,” says Threlkeld. “He’s a
different person now, spiritually and
emotionally.”
About the Author
(See page 70.)
71
insurance, funding & employment
ABC Prosthetics & Orthotics • College Park Industries • Innovative Prosthetic Designs
Marshall J. Cohen, Esq., ACA Board of Directors Member • Ohio Willow Wood • OrthoPro of Twin Falls, Inc.
Otto Bock HealthCare • Outsource Marketing Solutions, LLC
Progressive Orthotic & Prosthetic Services, Inc. • Scott Sabolich Prosthetics & Research
Small Business Accounting Solutions, Inc. • TMC Orthopedic
Limb loss is a significant medical, economic,
social and public health issue.
People living with the loss or absence of a limb face discouraging
obstacles when trying to obtain prosthetic care. Current changes
in insurance coverage for prostheses threaten their ability to lead
independent, productive lives that contribute to society, leaving them
instead dependent on state and federal programs. Unable to afford
prostheses, amputees are at risk for dangerous and costly secondary
conditions.
Prostheses are now included in Durable Medical Equipment (DME)
benefits. Third-party payers of these benefits make it increasingly difficult
for amputees to afford artificial limbs by imposing unrealistic annual and
lifetime caps such as:
• One limb per lifetime
• $2,500 per lifetime
• $500 per year.
Medicare is putting pressure on providers by freezing reimbursement at
the 2003 level.
State Medicaid programs are threatening to cut coverage for prostheses.
To compound the problem, enrollment in prosthetic schools declined until
recently, with some closing at a time when the number of amputations is
expected to rise due to the near epidemic of obesity and diabetes.
The Amputee Coalition of America (ACA) has assumed the challenge to
address and improve the health and care of people living with the loss or
absence of a limb and those at risk for primary amputations or secondary
conditions, including additional amputations.
Limb Loss Facts
• 1.6 million Americans live with limb loss/
absence, according to an unpublished
study by Johns Hopkins University
• Over 185,000 amputations are performed
each year in the U.S.
• Over 1,000 Americans are born each year
with limb differences
• The No. 1 cause of traumatic amputations
in children is lawn mower accidents
• The number of amputations is expected to rise
Diabetes and Amputation:
An Emerging Public
Health Crisis
• 20.8 million Americans live with diabetes
• Approximately 1/3 of these are
undiagnosed
• More than 65% of amputations performed
on people age 50+ are due to diabetes or
peripheral vascular disease
• 85% of these are preventable
• 41 million Americans exhibit pre-diabetic
changes in diagnostic tests
• African Americans, Native Americans and
Hispanic/Latino Americans have a very
high incidence of diabetes
The ACA is focusing on two main areas:
A Growing Threat
to Coverage
• Uniting patients, providers and manufacturers to identify ways to resolve
access and coverage issues for prosthetics and care for all amputees in the U.S.
• Partnering with other health organizations to promote healthful lifestyles, which can prevent primary amputations and secondary conditions that can result in additional amputations.
• Third-party payers are eliminating or
restricting coverage
• Medicare reimbursement is frozen
• Coverage is likely to be further reduced
without conclusive, objective research to
demonstrate the cost-effectiveness of
appropriate healthcare and prosthetics
For more information or to join the effort, go to www.amputee-coalition.org/aca_advocacy.html or contact prossbach@
amputee-coalition.org or lduncan@amputee-coalition.org
Note: No funding from the Centers for Disease Control & Prevention (CDC) is used to support ACA advocacy efforts.
The views represented here do not necessarily represent the views of the CDC.
Ask the Information Specialist
Answers to Your Insurance and Social Security Questions
I
Compiled by the National Limb Loss Information Center (NLLIC)
1. I have been denied a prosthesis by my insurance company.
What should I do?
Denials of claims for a prosthesis are
common. However, your insurance
company should have a procedure in
place for you to ask the company to
reconsider its decision. Usually, the
insurance company will require you
to submit an appeal letter and other
supporting documentation. Frequently
requested information includes medical
records and a statement from your
treating physician. Samples of appeal
letters and other useful information can
be found at the following Web sites.
The Patient Advocate Foundation
www.patientadvocate.org/resources.
php?p=36
Health Rights Hotline
www.hrh.org/cag/samintro.html
Claims Examiner Not Covered
for Prosthesis
www.amputee-coalition.org/inmotion/
jun_jul_97/examin.html
Reimbursement Issues: Appealing
to Your Insurance Carrier
summer_95/insurance.html
Prosthetic Costs
www.amputee-coalition.org/first_step/
When Your Insurance Claim Is Denied
may_jun_03/denied.html
Reimbursement Issues: Persuasion +
Persistence = Claims Approval
feb_mar_96/reimbursement.html
74
2. I have applied for Social
Security disability but have
been denied. What should I do?
Social Security is a federal program
that provides assistance to people
with disabilities. Eligibility for disability
benefits under Social Security is based
on an inability to perform your previous
job or to adjust to a new job because of
your disability. Receipt of a denial letter
indicates that you have been determined
ineligible for benefits under these rules.
If you receive a denial letter, however,
don’t be discouraged. Many applicants
are denied Social Security benefits the
first time they apply. Consider retaining
a lawyer or other representative to help
you with the appeals process. Additional
information about procedures for appealing your eligibility determination can be
found at the following Web sites.
Benefits For People With Disabilities
www.ssa.gov/disability
Your Right To Representation
www.ssa.gov/pubs/10075.html
Suggestions for Social Security
Disability Applicants
www.amputee-coalition.org/fact_sheets/
ssdapplicants.html
The Appeals Process
www.ssa.gov/pubs/10141.htm
Lawyers.com
www.lawyers.com
FindLaw
www.findlaw.com
3. Which health insurance plan
is best for amputees?
Finding a good health insurance plan
can be difficult. All policies are different
so you will want to find a policy that fits
your personal needs. You should start
by gathering basic knowledge about
insurance and deciding which benefits
are important to you. After doing this,
you can compare plans. Some important
things to consider are the services
offered, the choice of providers, the
location of care, and the cost of the plan.
An important section of the policy to
consider, as an amputee, is the coverage
under Durable Medical Equipment. More
information about health insurance can
be found at the following Web sites.
Have You Read Your Insurance Policy
Lately?
may_jun_03/insurance.html
healthinsuranceinfo.net
www.healthinsuranceinfo.net
Toll-Free Numbers Provide Health
Insurance Information
aug_sep_97/tollfree.html
Choosing and Using a Health Plan
http://personalinsure.about.com/gi/
dynamic/offsite.htm?zi=1/XJ&sdn=pers
onalinsure&zu=http://www.ahcpr.gov/
consumer/hlthpln1.htm
National Association of Insurance
Commissioners
www.naic.org/index.htm
Please contact the Amputee Coalition
of America’s National Limb Loss
Information Center at 888/267-5669 for
printed copies of any of this material.
A Guide to Advocating for
Disability Insurance Benefits
Where to Look for Financial Security as You Plan a New Life
F
by Gerald B. Kagan, Esq., and Jeffrey J. Cain, MD
Faced with amputation, you expect the challenges of a changed body
and the need for time to adapt to a multitude of new issues such as
prosthesis use and pain management. However, you may not anticipate
the added hurdles of a confusing disability insurance system.*
Such insurance is supposed to provide some
financial security while you regain your physical
and emotional equilibrium. Unfortunately, that is
not always the case.
This article identifies possible sources of
disability insurance benefits and information
about dealing with the insurance companies
that provide them. Obviously, the extent of your
impairment and the progress of your adjustment
will affect the role you play in seeking benefits.
The oft-quoted expression that “you are
responsible for your own well-being” is
particularly fitting in today’s hostile insurance
environment. You cannot rely on your healthcare
providers to be advocates – sometimes they need
their own! You must be able to determine what
benefits are available and how to maximize your
chances of obtaining them. Your life is precious,
and you must advocate on its behalf.
Insurance Benefits That May Be
Available to You
Employer-Sponsored Plans. Review any benefit
materials provided by your employer and
question human resources personnel about the
availability of disability benefits.
Private Insurance. Review the terms of any of
your private insurance policies.
Social Security Act. This federal law provides
benefits depending on your degree of disability
and finances. Supplemental Security Income
(SSI) benefits are available to those with little
income and few assets. Social Security Disability
Insurance (SSDI) benefits may be available if you
can’t work. After two years of SSDI benefits, you
are automatically eligible for Medicare, regardless
of age. Such eligibility opens the door for coverage
under the new Medicare drug coverage plans.
75
Some “Dos and Don’ts”
of Advocacy
State Disability. A few states offer up to
a year of short-term disability benefits.
The payment amounts can be significant
and are particularly helpful in those
early months when you’re adjusting to
your new life. Call your state insurance
department for information regarding
benefits available to residents.
Basic Elements of the Law
A basic knowledge of the applicable
rules affecting disability insurance will
help you understand and anticipate
some of the seemingly strange actions of
insurance companies.
76
The Employee Retirement Income
Security Act of 1974 (ERISA). ERISA
is a federal law that was originally
designed to protect workers’ pensions.
Unfortunately, it has evolved over the past
30 years into a law that governs almost all
employer-sponsored health and disability
plans (which comprise about 90 percent
of existing insurance). ERISA’s provisions
“trump” most conflicting state laws.
ERISA protects the insurer from thirdparty reviews of its benefits decisions,
even if the insurer acted contrary to
medical evidence. In those few cases in
which it is eventually determined that a
rejection of benefits was improper, the
insurer can only be made to pay you
what it should have already paid (plus,
possibly, attorney fees). You cannot
recover additional damages for the
company’s wrongful conduct. Because
of such “protection,” the insurer’s
description and interpretation of your
impairments and the type of work
you can perform often bears little
resemblance to the actual facts.
Treating Physician Rule. In 2003, the
U.S. Supreme Court changed the rule that
allowed many states to give preference to
the opinions of your healthcare providers
when considering benefit claims. Now, if
your regular physician believes that you
are unable to work, but the company’s
physician (whom you may never see)
states otherwise, your claim may be
“properly” denied.
The Health Insurance Portability and
Accountability Act (HIPAA). HIPAA is
a new law dealing with, among other
things, the privacy of your records
and documents. It can be used to your
advantage, as will be shown later.
An understanding of available
benefits and the rules that affect their
consideration is no assurance that you’ll
actually succeed in getting the benefits.
However, such knowledge empowers you
and helps level the playing field with the
insurer who may try to push its agenda to
cut benefits, based on its belief that you
will not stand up for your rights.
Insurance companies know that the deck
is stacked against anyone who doesn’t
get benefits approved at the insurance
company level. Therefore, you must
carefully approach both your initial claim
(usually decided by an insurance analyst
who is under pressure to keep payments
to a minimum) and your appeal of a
denial or termination of benefits (which
will be decided by people at the same
insurance company that made the denial
or termination). You must convince the
insurer that your claim has merit and
that you are entitled to your benefits.
A well-planned strategy is imperative.
Here’s some basic information and hints
regarding the steps to take and the
traps to avoid when advocating for your
benefits.
DO find a patient advocate, if
appropriate. If you’re not up to filing your
own claim, or in all cases when an appeal
is required, find an advocate. Your claim
will be professionally handled, and the
insurance company will know that you
mean business. HINT: Find an advocate
who won’t charge you anything unless
you receive your benefits.
DON’T talk “casually” to insurance
company personnel who call you; limit
the conversation and be careful what
you say. Your seemingly innocuous
comments could be used to cast
doubt on your claim. HINT: Insist that
conversations not be recorded. Ask the
caller to speak to your advocate if you
have one.
DO have your physician complete
the Attending Physician Statement
provided by the insurance company.
HINT: The physician should only
complete sections relevant to his or
her specialty. For example, an internist
should not respond to questions about a
patient’s “psychiatric impairments.”
DON’T have your physician send
office notes, if it can be avoided. Even
physicians with your best interests at
heart are often too busy to consider
the consequences of what is scribbled
in their files. The insurance company
can and will take portions of the notes,
often out of context, and use them as a
basis for a denial. HIPAA may allow you
to delay or avoid any such filings. HINT:
Rather than sending notes, ask your
physician to write a letter summarizing
your condition and stating whether your
disabilities prevent your return to work.
Ask to review the letter before it is sent.
DO schedule regular appointments
with your physician. Disability policies
require that a patient remain under the
regular care of a physician. Periodic
examinations are a must. HINT:
Determine an appropriate interval for
regular appointments (monthly, for
example), and schedule your next one
before leaving the physician’s office.
DON’T state emotional symptoms, such
as anxiety and depression, as the cause
of your disability. Benefits for disability
caused by mental or emotional disorders
are strictly limited under most disability
policies, and insurers will label your
condition as “mental” or “somatoform”
(psychosomatic) when possible. Almost
everyone with a significant physical
disorder will have some accompanying
anxiety or depression, but they are not
the main cause of your impairments.
HINT: If necessary, get a psychiatrist to
rule out mental disease as the primary
cause of your disability.
DO request and review a copy of the
insurer’s entire file about your claim, as
well as other information permitted by
ERISA, if your claim is denied. You may
find information that you can use in your
appeal. HINT: Check out your appeal
rights independently of information given
to you by the insurance company.
DON’T forget to ask everyone helping
you with your claim to contact you
before responding to a request from
an insurance company or its agents.
Companies may hire people to gather
information about you, and you should
be aware if this is occurring. HINT: Keep
a diary of anything that seems unusual.
Call 911 if you think that you’re being
followed or watched.
There are other matters to be
considered when filing a disability claim
or appeal. Keep in mind that you may be
“totally disabled” under the terms of a
disability policy, even though you could
soon begin a full, productive and exciting
life.
As previously noted, your personal
condition will often dictate how much
advocacy you can handle and how much
assistance you should seek. Remember,
fairness doesn’t always determine
whether you will receive disability
insurance benefits; all too often, the
decision is based on whether the insurer
can find a reason for denial. You don’t
want to unwittingly be the cause of that
result.
* Note: This article deals only with
insurance plans, not with obtaining
federal and state benefits that may be
available.
About the Authors
Gerald B. Kagan is
a patient advocate
who helps people
nationwide to pursue
disability and health
benefits. He practiced
law for almost 30 years before taking on
his latest labor of love.
E-mail: gbkagan@aol.com
Telephone: 310/230-8333
Jeffrey J. Cain, chief of
family medicine at The
Children’s Hospital in
Denver, Colorado, has
lobbied for many years
for the right to include
prosthetic coverage in medical insurance.
He is an ACA Board member and
chairs its Public Policy and Advocacy
Committee.
E-mail: cain.jeffrey@tchden.org
Telephone: 303/861-3980
Copyright 2005 Gerald B. Kagan and Jeffrey J. Cain
77
Vocational Rehabilitation
Helping People With Disabilities Define Career
Goals, Find Employment
A
by Bill Dupes
Although many are still willing and eager to work, experienced workers are
aging and retiring faster than they can be replaced. In fact, according to the
U.S. Chamber of Commerce, American businesses could face a multimillion
worker shortage by 2010.
78
As a result of these shortages, businesses may
eventually have to turn to alternative labor pools,
such as the growing population of aging baby
boomers and people with disabilities, to fill many
of these positions.
Deciding on a career is not always easy,
however, for people of any age or ability, and these
individuals might want to explore the education
and employment options that might be available
to them. Moreover, although the chance to get
early positive work experience can be a critical
part of career success, the chance to learn about
education and employment opportunities and to
get experience is rarely available to young people
with disabilities.
This may be where Vocational Rehabilitation
(VR) can help.
What Is VR?
Vocational Rehabilitation is the national program
for assisting eligible people with disabilities to
define a meaningful career goal and become
employed. Each state capital has a central VR
agency and satellite offices throughout the state
that can be found in the telephone directory under
the STATE listing for Rehabilitative Services or
Vocational Rehabilitation Services.
dealing with
insurance,
funding
your emotions
& employment
Who May Apply?
VR is an eligibility program, not an
entitlement program. Decisions about
eligibility and the services you may need
are made on an individual basis. You may
apply for the program if:
• You are legally eligible to work in
the United States.
• You have a physical, mental or
emotional disability.
• The disability keeps you from finding
or keeping a job.
• You are willing and able to work.
How Does The Program Work?
VR accomplishes its mission through
Vocational Counseling and Guidance, VR
Services, Training and Education, and
Job Placement.
1.Vocational Counseling and Guidance.
A counselor will work individually with
you to provide support and assistance to
reach your goal. The services you receive
will depend on what you and your
counselor agree is needed to help you
become employed. This service helps
you better understand your potential,
set realistic job goals, change your job
goal when needed, and learn good work
habits. The information assessment
process may include:
• Information about your disability, education, and social or family situation
• An evaluation of your knowledge,
skills, abilities and interests
• An assessment of your work history,
work habits, and work tolerances
• An evaluation of your assistive technology needs to determine necessary
workplace accommodations.
2.VR Services. VR services are broadly
defined as any goods or services needed
to help you find employment. Following
a diagnostic evaluation, you may receive
one or more of the following services.
• Assessment Services identify your
strengths and limitations through
medical, psychiatric, social and psychological evaluation.
• Vocational Assessment identifies
your interests, readiness for work,
skills, and local job opportunities.
• Counseling and Guidance establishes an ongoing relationship between
you and the counselor as you explore
the evaluation results and develop a
realistic work plan.
• Restoration increases your work
potential through medical
treatments.
• Job Preparation helps you develop
work skills through volunteer experience, on-the-job training,
vocational education or classroom
training.
• Support Services may include
transportation assistance, buying
tools or equipment, or support for
independent living.
• Job Placement assists in developing
work opportunities and finding a job
suited to your interests and abilities.
• Independent Living Services
provide evaluations and services
that can help you deal with daily
living issues that can affect your
employment goals. Examples include
accessing community resources, selfadvocacy, money management, and
personal organization skills.
• Assistive Technology Services can
help in the evaluation, selection, and
acquisition of a device or equipment
to improve your work potential.
3. Training and Education. A number of
training options are available, depending
on your abilities and goals.
• On-the-Job Training
• Self-Employment offers unmatched
flexibility to accommodate a disabling
condition. Supporting services
include:
- Feasibility studies/market research
- Advice from business and
marketing consultants
- Assistance in acquiring start-up
funds or buying equipment.
• Supported Employment, in more
severe cases, may be available to you
and/or your employer to provide
intensive support in accessing and
performing the job, both on and off
the job site.
• Short-Term Vocational Training is
designed for students who wish to
enter the job market quickly. The
curriculum may require anywhere
from a few hours to two years.
• College Education. VR agencies can
provide a variety of assistance depending on your financial needs. First,
however, you must apply for financial
aid from the college you plan to attend.
Any resulting financial aid award must
be used toward the cost of your education before VR can pay any school related costs.
4. Job Placement. Though the VR program
helps individuals become job-ready, it is
not an employment agency. When you
are ready, you will need to look for a
job just like people without disabilities.
However, VR will help you in your search.
For example, VR will help you find job
leads, fill out applications, write a resume,
or practice for and set up job interviews.
In addition, VR can help you deal with
disability issues at work, such as:
• Learning what to say about your
disability to interviewers, your
employer, or co-workers
• Negotiating with an employer for any
changes to your job duties, worksite
modifications, or devices needed due
to your disability.
79
EMPLOYMENT RESOURCES
Student Transition Programs
Transition programs provide support and
guidance to students with disabilities
as they move from high school to the
workplace. These programs can help
students identify career interests and
learn about the skills and training needed
to prepare for careers in those fields.
HEATH Resource Center
800/544-3284
www.heath.gwu.edu
National Center on Secondary
Education and Transition
www.ncset.org
National Dissemination Center for
Children with Disabilities
National Directory
www.nichcy.org/pubs/outprint/nd22.pdf
Resources for Adults with Disabilities
www.nichcy.org/pubs/transum/adult.pdf
National Transition Network
ici2.umn.edu/ntn
Seniors
Some employment services are designed
to increase older workers’ employment
opportunities in the general labor
market and in community service.
Income-eligible individuals 55 and
older are recruited, trained and referred
to job openings with local employers
with the ultimate goal to place them in
nonsubsidized employment.
Administration on Aging
www.aoa.gov
Senior Community Service
Employment Program (SCSEP)
www.doleta.gov/seniors/HTML_Docs/
Docs/AboutSCSEP.cfm
AARP
www.aarp.org/money/careers
Experience Works
www.experienceworks.org
80
The National Caucus and Center on
Black Aged, Inc.
www.ncba-aged.org/#
Student Aid Resources
Senior Service America
www.seniorserviceamerica.org
Cool Works
www.coolworks.com/older-bolder
Veterans
The Department of Veterans Affairs (VA)
offers income, medical, educational and
VR services to qualified veterans.
Department of Veterans Affairs (VA)
www.va.gov
Center for Veterans Enterprise
www.vetbiz.gov
Disability Employment
In Home Products: Employment and
Education Resources
www.inhomeproducts.com/Employment.
html
Just One Break
www.justonebreak.com
Job Accommodation Network
www.jan.wvu.edu/links/employ.htm#
WORKSUPPORT.COM
www.worksupport.com
Vocational Rehabilitation State Offices
janweb.icdi.wvu.edu/sbses/
VOCREHAB.HTM
Federal Employment of People with
Disabilities
www.opm.gov/disability
America’s Career InfoNet
www.acinet.org/acinet
America’s Job Bank
www.ajb.org
CareerOneStop
www.careeronestop.org
Job-Hunt.Org
www.job-hunt.org
JobAccess
www.jobaccess.org
American Association of People
with Disabilities
www.aapd.com/links/
linkscholarshipawards.php
FastWeb
www.fastweb.com
FinAid
www.finaid.org/otheraid/disabled.phtml
Financial Aid for Students
With Disabilities
www.parentsinc.org/finaid/finaid.html
Higher Education and Adult Training
for People with Handicaps
800/544-3284
www.heath.gwu.edu
International Center for Disability
Resources on the Internet
919/349-6661
www.icdri.org/Financial%20Aid/finaid.
htm
Stepping Back Into Life, Inc.
www.LOIGNON.org
Two Good Legs to Stand On
by Rick Bowers
I
If anybody tries to tell you that amputees can’t do a certain kind of work,
you might want to kindly refer him or her to Jim “Rambo” Ramage. A
bilateral lower-extremity amputee, Jim does the type of difficult manual
labor that most able-bodied men couldn’t succeed at – heavy equipment
repair and welding. To do this job as an amputee, Jim simply requires two
things – the right attitude and the right prostheses.
Fortunately, he has both.
Becoming an Amputee
Jim became an amputee almost seven years ago
in 1999 when he was 51. He was outside his
shop – Rambo Welding in Harmony, Pennsylvania
– moving a bulldozer part that weighed more than
1,500 pounds when the accident occurred. While
he was trying to make sure the part was properly
hooked onto the truck crane it was attached to, the
part came loose and hit Jim with such an impact
that it knocked him several feet through the air.
“I remember lying there in the gravel alone,
busted up with a broken collar bone, a ruptured
spleen, and two mangled legs,” Jim recalls. “I was in
a lot of pain and trying to ‘holler’ but not much was
coming out.”
One of his employees, Jeff Prady, heard the thud
and came out to see what was happening. After
Jeff called 911, an ambulance arrived quickly,
and within 30 minutes, Jim was on his way by
helicopter to Presbyterian Hospital in Pittsburgh
where he received 10 pints of blood.
Jim’s legs could not be saved, however. That
night, his left leg was amputated above the knee,
and his right leg was amputated below the knee. In
addition, his ruptured spleen was removed.
for better or worse. My children were 4, 6 and 8
years old when I married Jim. He stuck by me and
helped me raise and provide for them. So how
could I run out on him when he needed me? I like
to think we’re like swans. They mate for life and
stick by each other’s side.”
Jim still jokes that the first thing Deb actually did
The Love of a Good Woman
When Jim regained consciousness and realized
that he had lost both legs, the first thing he asked
his wife, Deb, was, “Do you still love me?”
“I was just so happy that he was alive,” Deb
says. “I told him that he was about to learn what
love really is. I took my marriage vows seriously,
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was check out his life insurance policy.
“I did not,” Deb says, laughing.
In reality, the incident has actually
strengthened their 22-year marriage, they
say. Like many couples who have been
together a long time, they talk at the same
time, seeming to know what the other is
thinking and even finishing each other’s
sentences now and then. The banter
between them is loving and gentle, and
humor plays an important part in their
relationship. It’s clear that this union, the
second marriage for both, is alive and well.
“I wouldn’t have made it without her,”
Jim says. “When I got down, she boosted
me up.”
Recovery
Five days after his amputations, Jim was
transferred to Harmarville Rehabilitation
Hospital to begin his recovery process. “I
walked out of the rehab hospital 35 days
later on new legs,” Jim says.
For a while, Jim used two special
canes when he walked. Then, one day,
his surgeon – knowing that challenge
motivated Jim – challenged him to give up
one of them.
“So, I did,” Jim says. “In June, I walked
into his office with just one regular cane.
You don’t tell me I can’t do something.”
After eight months of physical therapy, he
partly gave up the other cane as well. He
still uses one at times but not in “familiar
territory” like his shop.
Still a Struggle
82
Though Jim has dealt well with his limb
loss, it hasn’t been easy.
Fortunately, about six weeks before
Jim’s accident, he had incorporated
his business; otherwise, he wouldn’t
have been able to apply for worker’s
compensation, and things would have
been a lot worse for him. Perhaps the
business would have been ruined.
“I was depressed and confused and
scared at times,” he admits. “My biggest
concern was that I wouldn’t be able to
stand for an hour at a time. How could
I work if I couldn’t stand? How could
I support my family? What kind of life
would I have?”
The mild depression finally lifted when
he went back to running his business
eight months after the accident, but it
was at least a year before Jim was steady
on his feet again. “I couldn’t have made it
without Deb,” he repeats.
A Man With a Work Ethic
Deb helped with the business while Jim
was recovering, and she even donned a
hard hat at times and helped out around
the shop.
“It wasn’t easy,” Deb says, “but I knew
that with Jim’s strong work ethic (his
father gave him that) and his strong mind,
he’d be back at work soon.” In fact, when
Jim’s customers worried that he would
have to go out of business, Jim went to an
Open House for his best customer just
three and a half weeks after his accident
to ensure them that he’d be back. He was
in a wheelchair and wearing shorts.
Even though it was difficult, he wanted
to stick with the career he had always
known and to continue his business. He
wasn’t interested in re-training for a desk
job. It just wasn’t him.
Using Technology
Jim received a $50,000 grant from
Vocational Rehabilitation in June 2000
that helped him get both a computerized
burning table that cuts shapes in steel
and a forklift with hand controls. He also
used the money to learn AutoCAD, a
computer program that enables him to
draw shapes on a computer and then
send them to the burning table. This
technology has helped him greatly.
Since returning to work, Jim has
become a legend. “I’m gonna have
Rambo do it,” customers and prospective
customers say. “Look at him go!”
“I’m still stubborn,” Jim says. “I still try to
do things myself. Whether it’s changing
an engine in a truck or fixing a bulldozer,
I still find a way to get it done myself.”
Getting Help, Helping Others
Looking back, Jim and Deb say that the
Amputee Coalition of America (ACA) is
the thing that helped them most after
Jim lost his legs. Since learning about
the ACA, they’ve attended every ACA
conference since 1999, except one when
Jim was ill, and have taken advantage of
ACA literature.
Jim is now a member of the Western
Pennsylvania Amputees Unlimbited
support group, and the couple take great
pleasure in helping new amputees.
Going through amputation and
recovery has made Jim a better person,
Deb says. “He’s not afraid to cry now.”
“Yes,” Jim says. “I’m softer, more caring,
and enjoy things more.”
What If?
It’s easy to wonder, though, what might
have become of Jim’s business and his
life if he had not been able to get the
prostheses he needed to be able to walk
and work again. Would he have been
able to return to his business or would
he have lost everything – his work, his
dreams, and his pride?
Fortunately, Jim and Deb never had to
find out. Thanks to excellent insurance
(worker’s compensation), Jim was able to
get back what he needed – two good legs
to stand on.
Opening Doors to the Workplace
for People With Disabilities
by Rick Bowers
W
When Frank (not his real name)
was hired to work for a national
nonprofit organization, he quickly
realized that he would need special
equipment to do his daily work.
A bilateral upper-limb amputee who wears
artificial limbs with split hooks, Frank was unable
to use a regular computer keyboard and mouse
efficiently – and a large part of his job required
him to do so. Fortunately, although neither he nor
his new supervisor knew exactly how to solve the
problem, they were both willing to find out what it
would take to help him succeed in his job.
A consultant at the Alliance for Technology
Access (ATA), a nonprofit organization that helps
people with disabilities reach their potential
through assistive technology, told Frank and his
supervisor about a special keyboard that he
thought would work for Frank. Frank’s company
purchased one of the devices, and Frank is still
using it today. It cost approximately $300 and was
the only special accommodation Frank needed to
do his job.
The ADA
Fortunately for Frank and other amputees, the
Americans with Disabilities Act (ADA), which
was passed in 1990 and prohibits discrimination
against people with disabilities, requires
employers with 15 or more employees to provide
“reasonable accommodation” to employees with
disabilities to help them perform their jobs unless
it would cause the employer “undue hardship”
(Job-Hunting for the So-Called Handicapped or
People Who Have Disabilities).
Reasonable accommodation, according to ADA
guidelines, generally means any modification or
adjustment that will enable a qualified person
with a disability to apply for a job, to perform its
essential functions, or to enjoy the rights and
privileges of the job at the same level as those
employees without a disability.
Obstacles that may need to be overcome
through special accommodations may include
procedural barriers such as work and break
times and physical barriers such as inaccessible
equipment or workplace facilities. Reasonable
accommodations might include providing such
devices as speech-recognition software or special
keyboards for people who only have one arm,
providing access to workplace lunchrooms and
restrooms for people in wheelchairs, or modifying
a person’s work schedule to allow him or her to
take more breaks or attend physical therapy.
The Job Interview
If you are an amputee seeking employment, there
will inevitably come a time when you will have to
go to a company for a personal interview. Though
interviews are stressful for everyone, if you have
a disability, especially a visible one, it can be even
more difficult. As the employer speaks to you,
perhaps you will feel that he or she is trying to
83
determine how your disability will affect
your ability to handle the job. He or she
may also be trying to figure out how
much money your disability will cost the
company – how much the company will
have to spend to provide “reasonable
accommodations” to help you do your
job. In fact, employers might not be
willing to hire a person with a disability
for fear that such accommodations are
going to be extremely expensive.
Of course, this is not the reason
they will give for not hiring you; they’ll
just make sure to find someone more
qualified.
The Statistical Reality
Fortunately, providing “reasonable
accommodations” is rarely a hardship for
a company. The keyboard Frank needed
cost only $300. And that’s not unusual.
The Job Accommodation Network
(JAN), for example, has shown that 15
percent of accommodations required for
people with disabilities cost nothing, 51
percent cost between $1 and $500, 12
percent cost between $501 and $1000,
and only 22 percent cost more than
$1000. Moreover, Francine Tishman,
former executive director of the National
Business and Disability Council, says
that more than half cost less than $100
(Americans with Disabilities at Work).
In addition, although an employer
might expect to have to provide an
expensive accommodation, such as
installing a lower water fountain for
an employee in a wheelchair, the
accommodation might be provided
less expensively by installing a paper
cup dispenser next to the higher water
fountain used by other employees.
By using creative thinking, it is often
possible to find a more economical way
to satisfy the reasonable accommodation
requirement.
Making It Easier
84
JAN, a free consulting service of the
Office of Disability Employment Policy
(ODEP) of the U.S. Department of Labor,
Jeff A. Zeller became an ABC-certified prosthetist after losing his leg below the knee to a
drug- and alcohol-impaired driver.
provides people with disabilities,
employers, and other interested parties
information about accommodations to
help people with disabilities acquire and
keep jobs.
When an employer or employee
doesn’t know how to solve a problem that
is impeding the work of someone with a
disability, JAN consultants – like the ATA
did for Frank – can help him or her come
up with solutions for specific situations.
In addition to providing solution ideas,
numerous organizations even provide
funding for accommodations (see www.
jan.wvu.edu/links/funding.htm), and
the government offers tax incentives
to employers to encourage them to be
willing to make accommodations (see
www.jan.wvu.edu/links/ADAtam1.
html#III).
“Every state has vocational
rehabilitation agencies whose sole
purpose is to assist people with
disabilities to obtain the skills, training
and confidence necessary to enable
them to take their rightful place in
the economy,” says the Council of
State Administrators of Vocational
Rehabilitation (CSAVR). These agencies
might also provide assistive technology,
personal care attendants, a prosthesis,
a wheelchair, a lift, adaptive driving
equipment or transportation to help
consumers perform their work duties.
(For more information about vocational
rehabilitation, see pages 78-82).
With the ADA on our side, the low cost
of most accommodations, and help from
organizations and the government in
finding and paying for accommodations,
employers really have little to fear. It’s
only a matter of letting them know.
For more information on accommodations and adaptive technology
that might help you, please contact the
following:
Alliance for Technology Access
Phone: 707/778-3011
www.ATAccess.org
Job Accommodation Network (JAN)
Phone: 800/526-7234
www.jan.wvu.edu
RESNA Technical Assistance Project
Phone: 703/524-6686
www.resna.org/taproject/index.html
Vocational Rehabilitation State Offices
http://janweb.icdi.wvu.edu/SBSES/
VOCREHAB.HTM
Preventing secondary conditions
Advanced Prosthetic Center, LLC • American Amputee Foundation • College Park Industries
Georgia Prosthetics, Inc. • Northwest Prosthetic & Orthotic Clinic • Omni Prosthetics and Orthotics, Inc.
Orthopedic Appliance Company, Inc. • Orthotic & Prosthetic Design, Inc. • Ossur
Prosthetics Research Specialists, Inc. • Sunrise Medical
E
Even after you feel that you have recovered from the loss of a limb, been
rehabilitated, and, hopefully, reintegrated into the lifestyle you would like
Photo courtesy of Ossur
to continue, you should not consider your “problem” over.
86
The loss of a limb can affect you in many more
ways than just physically, including emotionally,
socially and financially. In this section, however,
we will focus on many of the secondary physical
conditions that can result from or be worsened by
the loss of a limb.
These secondary physical conditions could
include weight gain, loss of muscle mass and
bone density due to lack of use, contractures of
joints, injuries as a result of falls, skin problems
and infections, back, hip, knee and shoulder
problems, and additional problems with your
remaining limbs from overuse and added stress.
As an amputee, you might also be at risk for
diseases and disorders, such as diabetes, high
blood pressure, and heart disease, which could
possibly lead to the loss of an additional limb.
These conditions are often related to inactivity
and “being out of shape,” obesity, improper
prosthetic fit, a lack of physical therapy and an
inefficient gait, the failure to properly monitor skin
problems, and an overall lack of knowledge about
appropriate self-care as an amputee.
Here, we will discuss these problems and a
number of possible solutions for them.
The Big “O”
O
by Terrence P. Sheehan, MD
O-b-e-sity. It’s really not a pleasant-sounding word, is it? Perhaps it would sound
better with a French accent. Either way, it’s certainly creating health-related havoc
and headlines everywhere. Unfortunately, those with limb differences are not exempt
from joining the mass numbers of Americans who are classified as obese and are
at risk for the many problems caused by this rampant disorder. In fact, they may be
more likely to suffer from it.
Health professionals define “overweight” as an
excess amount of body weight that includes
muscle, bone, fat and water. Obesity, on the other
hand, specifically refers to an excess amount of
body fat. We have been conditioned to think of fat
as negative; it’s the three-letter word that we trim
from food, budgets and our vocabulary. To refer
to a person as “fat” in any way is politically and
socially wrong. In fat’s defense, however, let it be
known that everyone needs a certain amount of
body fat for stored energy, heat insulation, shock
absorption, and other functions. Still, a man would
be wise not to mention the fact that women, in
general, have more body fat than men. It could be
dangerous to his health.
Methods of Measuring Obesity
Measuring the exact amount of a person’s body fat
is not easy. The more precise ways of measuring
body fat (weighing a person underwater using
“harmless” amounts of electricity through
his or her body or using Dual Energy X-Ray
Absorptiometry) conjure up visions of torture.
Fortunately, the equipment needed for these
techniques is only available at specialized
research centers.
Healthcare providers rely on other means
to diagnose obesity, such as measuring the
thickness of the layer of fat under the skin in
several areas of the body. Unfortunately, this is
an inaccurate method if the person doing the
measuring is inexperienced or if the person
being measured has severe obesity. Height and
weight tables have also been used for decades,
but there are many versions (i.e., the system is not
standardized), and the tables don’t differentiate
between those who have excess fat and those who
are muscular or “big-boned.” Currently, body mass
index (BMI) is the medical measurement standard
used to define a person as overweight or obese.
BMI uses a mathematical formula based on a
person’s height and weight. It equals weight in
kilograms divided by height in meters squared
(BMI=kg/m2). A person with a BMI of 30 or higher
is considered obese, while a person with a BMI of
25-29.9 is considered overweight.
With this in mind, I approach the chart like a
self-assured physician and come away screaming,
“No! No! No! That stupid chart must be wrong. I
don’t eat much! I run four miles three times a week
and never sit down.” Still, give or take a pound
(literally), I am on the line between overweight and
obese. The last time I was in the healthy weight
zone, I was learning trigonometry and working at
the ice cream store (I can still make a mean shake).
Though BMI does not differentiate between
excess fat and muscle, the reality is that I can join
the large (no pun intended) group of Americans
who can easily afford to lose 20 or more pounds.
Of course, this is easier said than done.
The Hard Truth
In scientific terms, obesity occurs when a person
consumes more calories than he or she burns.
Though this imbalance between calories-in and
calories-out is related to genetic, behavioral,
medical, environmental and other factors, it all
boils down to a simple (but difficult) fact: You need
to take in less than you put out to be “a big loser”
(the good kind).
The numbers are shocking. Two-thirds of
U.S. adults are overweight, and half in this
group are officially obese. The rates are even
higher for African Americans and Hispanic/
Latino Americans. In addition, one in six kids is
overweight, and even our pets are pudgy. This
excess weight is not just an aesthetic problem,
however; it is wreaking havoc on our bodies. It
87
increases the risk of diabetes, heart
disease, high blood pressure, stroke,
osteoarthritis, infertility, gall-bladder
disease, and many forms of cancer.
Diabetes
A significant number of people with limb
differences know this because they have
undergone amputation after diabetesrelated nerve and blood vessel injury in
their foot that led to a deep nonhealing
ulcer. Diabetes is a disease in which
blood sugar levels are above normal.
More than 80 percent of those with adultonset diabetes (Type 2) are overweight.
Though it is not known why people
who are overweight develop diabetes,
it is suspected that being overweight
causes the cells to be more resistant to
the hormone insulin, which works to
store sugar in our cells. As a result, sugar
remains at high levels in our blood and
causes damage to the blood vessels that
run throughout our body, our nerves,
and our organs, including the heart and
kidneys. In the medical community, it is
believed that if you lose weight, you will
also lose the adult-onset diabetes or at
least improve your ability to control it.
Heart Disease
88
The heart pumps blood around the
body. Heart disease means that the
heart and circulation (blood flow) are
damaged. Those with heart disease may
experience a blockage of the blood flow
to parts of their heart, which ultimately
results in death to those areas of the
heart. Once the heart is damaged, those
individuals may experience congestive
failure, abnormal heart rhythms, angina
(chest pain), or complete heart failure.
People who are overweight are more
likely to have high blood pressure, high
levels of triglycerides (blood fats), high
levels of LDL (bad) cholesterol, and
low levels of HDL (good) cholesterol
– all risks for heart disease. In addition,
people with more body fat have higher
blood levels of substances that cause
inflammation, and inflammation in blood
vessels and throughout the body may
also raise the risk for heart disease.
For those using a prosthesis, heart
health is very important. Transfers,
walking, and climbing steps make the
heart expend energy. If the heart is
diseased, it pumps less efficiently and,
thus, has to work harder. An obese
patient using a prosthesis puts even
more stress on this diseased heart. For
some, the risk of more heart damage
and even heart failure (death) is so great
that using the prosthesis is limited or not
recommended.
The good news is that losing just 5 to
15 percent of your weight can lower your
chances for developing heart disease.
If you weigh 200 pounds, this means
losing as little as 10 pounds. Weight
loss improves your blood pressure,
triglycerides, and cholesterol levels and
decreases inflammation throughout your
body. Aerobic exercise (such as walking,
propelling a wheelchair, and swimming)
improves the ability of the heart to
pump effectively and efficiently. Still, it is
important that those with heart disease
get their doctor’s permission and
guidance before they start an aerobic
exercise or cholesterol management
program.
Osteoarthritis
Extra weight can also put additional
pressure on a person’s joints and bone
covering (cartilage). Osteoarthritis (OA)
is a common joint disorder in which the
bone in the joints becomes irregular
and deformed and the cartilage wears
away. This disorder most often affects
the weight-bearing joints of the hips and
knees, as well as the lower back.
Unfortunately, for those with lowerextremity limb loss, weight-bearing
is often shifted partly to the upper
extremities or disproportionately to the
sound (nonprosthetic) side, where joint
irritation may then occur earlier and/or
more severely. Weight loss can, however,
decrease stress on the knees, hips and
lower back and, thus, decrease the
irritation, inflammation and wear and
tear on these joints. For those who are
overweight or obese, the strategic use
of an assistive device (a cane, a walker,
crutches or a wheelchair) can also help
limit joint irritation and wear, conserve
the use of the joints for quality activity,
and decrease painful mobility.
It Gets Worse After Limb Loss
If you weren’t overweight before, there
is a good chance that you will slowly
put on the pounds due to decreased
activity after your limb loss. The equation
remains the same: If you take in more
than you burn off, the excess fat will build
up around your thighs, waist, heart – you
name it! After an amputation, eating less
and exercising more become the only
ways to alter this equation in your favor.
To meet this challenge, we need to
accept the realities of our time. Today,
technology has almost removed physical
exercise from the day-to-day lives of most
Americans. At the same time, high-calorie,
great-tasting treats fill our pantries, and
the advertising industry demands that we
eat plenty of them. Food is the center of
social interaction, comfort for our losses,
and pleasure at a time when pleasure
has been limited. Unfortunately, there is
no magic pill to increase our ability to
burn fat or to exercise. Understanding
these facts is important to help us create
a mindset that forces us to accept the
equation and that helps move us toward
the healthy weight status. This is done
day by day and pound by pound.
Problem for Prosthesis Users
Weight control is especially important
once a person is fitted for a prosthetic
device because a change of weight of 10
pounds or more will alter the customized
fit of the prosthesis.
A poorly fitting prosthesis puts the
user at risk for skin breakdown, pain, an
abnormal walking pattern, and stress on
other parts of the body. To solve these
problems, a costly socket change is
usually needed. Also, for those who are
overweight or obese before the fitting of
their prosthesis, that customized fit is a
huge challenge. Successfully securing
stable suspension, especially in those
with an above-knee prosthesis, is often
complicated and sometimes not possible.
Dealing With This Epidemic
To end the subject of obesity is a difficult
task. These are the facts:
• Limb loss is sometimes indirectly
caused by obesity.
• Obesity often occurs after limb loss.
• Obesity makes the fitting and use of a prosthesis more of a challenge.
• Obesity is an epidemic in the United States, and it has already shortened
the life expectancy of today’s children.
• Obesity is a critical life issue for those who are carrying this excess weight because of the stress and damage it
quietly causes in their bodies.
• There is no easy fix for obesity.
Although much has been written about
various diets, types of surgery, drugs
to change metabolism, and forms of
exercise, each of these approaches has
its merits and flaws. The bottom line is
that we need to alter the equation by
taking in less and putting out more. This
is a very difficult task. It is a commitment
to self. It is a commitment to health and
a daily chore for life. It is a behavior
change, much like breaking addictions
to smoking, alcohol and gambling. It
requires willpower, perseverance and
friends. These friends include healthcare
providers who can counsel, prescribe,
support and listen, but never judge.
Healthcare providers need to examine
their own prejudices regarding obese
and overweight people. These biases
are similar to those that focus on age,
skin tone, religious convictions, etc. It
is, therefore, important that healthcare
providers receive education about
obesity, obtain a better understanding of
it, and become more sensitive to those
who are counting on them for care,
support and guidance. The healthcare
provider giving the dreaded diet lecture
is not helpful. We need to find ways to
make large people more comfortable
about seeking healthcare. It is in the
asking for help for this critical health
issue that partnerships for change may
be born. It is only then that we can work
together to overcome this crisis.
About the Author
(See page 9.)
Weight Management One Step at a Time
It’s great to join a health club or
purchase special exercise equipment
to help you diet and exercise regularly.
But if you can’t take these drastic steps
for some reason, you can still take small,
achievable steps to get active, eat more
healthfully, and improve your health,
according to the U.S. Department of
Health & Human Services (HHS). Just
by making small changes in your daily
routine - like parking farther away from
your destination, playing active games
with your kids, and eating only half of
your dessert - you can start living an
active, healthy life.
“Each small step does make a
difference, whether it’s taking the stairs
instead of an elevator or snacking on
fruits and vegetables,” says former HHS
Secretary Tommy G. Thompson.
Following is a brief list of some of the
thousands of small steps you can take
for your health. They are all about moving
more and eating better. And they add up,
especially if you do them regularly.
• Use fat free milk instead of whole milk.
• Do sit-ups in front of the TV.
• Walk during lunch hour.
• Drink water before a meal.
• Take a family walk after dinner.
• Avoid food portions larger than your fist.
• Do your own yard work.
• Don't eat late at night.
• Skip second helpings.
• Grill, steam or bake instead of frying.
• Wash the car by hand.
• Walk or do desk exercises instead
of taking a cigarette or coffee break.
• Dance to music.
• Walk briskly in the mall.
• Choose fruit for dessert.
• Choose physical activities you enjoy so you'll stick with them.
• Eat before grocery shopping.
• Buy 100 percent fruit juices instead
of sugary drinks.
• Flavor foods with herbs, spices, and
other low-fat seasonings.
For more information on the small steps
you can take to improve your health,
visit www.smallstep.gov/sm_steps/sm_
steps_index.html.
To learn more about healthful eating,
exercise and more rigorous programs,
see the resource lists on pages 94 and
125-128 and look under Nutrition,
Weight Management and Exercise.
Note: Always consult a doctor before
starting any new diet or exercise
program.
89
Growing Stronger
Strength Training for Older Adults:
Why Strength Training?
R
Research has shown that strengthening exercises are both safe and
effective for women and men of all ages, including those who are not
in perfect health. In fact, people with health concerns – including heart
disease or arthritis – often benefit the most from an exercise program
that includes lifting weights a few times each week.
Strength training, particularly in
conjunction with regular aerobic exercise,
can also have a profound impact on a
person’s mental and emotional health.
Benefits of Strength Training
There are numerous benefits to strength
training regularly, particularly as you grow
older. It can be very powerful in reducing
the signs and symptoms of numerous
diseases and chronic conditions, among
them:
• arthritis
• diabetes
• osteoporosis
• obesity
• back pain
• depression
Arthritis Relief
90
Tufts University recently completed a
strength-training program with older men
and women with moderate to severe knee
osteoarthritis. The results of this 16-week
program showed that strength training
decreased pain by 43 percent, increased
muscle strength and general physical
performance, improved the clinical
signs and symptoms of the disease, and
decreased disability. The effectiveness
of strength training to ease the pain of
osteoarthritis was just as potent, if not
more potent, as medications. Similar effects
of strength training have been seen in
patients with rheumatoid arthritis.
Restoration of Balance and
Reduction of Falls
As people age, poor balance and flexibility
contribute to falls and broken bones. These
fractures can result in significant disability
and, in some cases, fatal complications.
Strengthening exercises, when done
properly and through the full range of
motion, increase a person’s flexibility and
balance, which decrease the likelihood and
severity of falls. One study in New Zealand
in women 80 years of age and older
showed a 40 percent reduction in falls with
simple strength and balance training.
Strengthening of Bone
Post-menopausal women can lose 1-2
percent of their bone mass annually.
Results from a study conducted at Tufts
University, which were published in
the Journal of the American Medical
Association in 1994, showed that strength
training increases bone density and
reduces the risk for fractures among
women age 50 to 70.
Proper Weight Maintenance
Strength training is crucial to weight
control because individuals who have
more muscle mass have a higher metabolic
rate. Muscle is active tissue that consumes
calories while stored fat uses very little
energy. Strength training can provide up
to a 15 percent increase in metabolic rate,
which is enormously helpful for weight loss
and long-term weight control.
Improved Glucose Control
About 20.8 million Americans now have
diabetes, and the numbers are steadily
climbing. In addition to putting people at
greater risk for heart and renal disease
and amputation, diabetes is also the
leading cause of blindness in older adults.
Fortunately, studies now show that lifestyle
changes such as strength training have a
profound impact on helping older adults
manage their diabetes. In a recent study
of Hispanic men and women, 16 weeks
of strength training produced dramatic
improvements in glucose control that are
comparable to taking diabetes medication.
Additionally, the study volunteers were
stronger, gained muscle, lost body fat, had
less depression, and felt much more selfconfident.
Healthy State of Mind
Strength training provides improvements
in depression similar to anti-depressant
medications. Currently, it is not known if
this is because people feel better when
they are stronger or if strength training
produces a helpful biochemical change
in the brain. It is most likely a combination
of the two. When older adults participate
in strength training programs, their selfconfidence and self-esteem improve, which
has a strong impact on their overall quality
of life.
Sleep Improvement
People who exercise regularly enjoy
improved sleep quality. They fall asleep
more quickly, sleep more deeply, awaken
less often, and sleep longer. As with
depression, the sleep benefits obtained as
a result of strength training are comparable
to treatment with medication but without
the side-effects or the expense.
Healthy Heart Tissue
Strength training is important for cardiac
health because heart disease risk is
lower when the body is leaner. One
study found that cardiac patients gained
not only strength and flexibility but also
aerobic capacity when they did strength
training three times a week as part of their
rehabilitation program. This and other
studies have prompted the American
Heart Association to recommend strength
training as a way to reduce the risk of heart
disease and as a therapy for patients in
cardiac rehabilitation programs.
Research and Background
About Strength Training
Scientific research has shown that exercise
can slow the physiological aging clock.
While aerobic exercise, such as walking,
jogging, or swimming, has many excellent
health benefits – it maintains the heart and
lungs and increases cardiovascular fitness
and endurance – it does not make your
muscles strong. Strength training does.
Studies have shown that lifting weights two
or three times a week increases strength
by building muscle mass and bone density.
One 12-month study conducted on postmenopausal women at Tufts University
demonstrated 1 percent gains in hip and
spine bone density, 75 percent increases
in strength, and 13 percent increases in
dynamic balance with just two days per
week of progressive strength training.
The control group had losses in bone,
strength and balance. Strength training
programs can also have a profound effect
on reducing risk for falls, which translates
to fewer fractures.
Content source: Division of Nutrition and
Physical Activity (www.cdc.gov/nccdphp/
dnpa), National Center for Chronic Disease
Prevention and Health Promotion (www.
cdc.gov/nccdphp)
For more information and for specific
exercises, go to www.cdc.gov/nccdphp/
dnpa/physical/growing_stronger/index.
htm
Reprinted from the Centers for
Disease Control and Prevention (www.cdc.
gov/nccdphp/dnpa/
physical/growing_stronger/why.htm)
Tips for Amputees
by Anne F. Street, MSPT, Prosthetist, CPI, STS
If you are deconditioned or have
multiple medical issues, undertake
any strength training program with
a modicum of caution.
The safe and smart course is to participate in a slow, gradual progression
of activity while maintaining good
communication with your primary
healthcare provider. Always check with
your physician before beginning a new
fitness regimen.
Pace your exercises to minimize
the potential for injuries.
You should be realistic about the
number of exercises you plan to do
and the amount of time a day or times
a week you plan to spend on them.
Compliance with any exercise program
can be improved if the amount of time is
manageable. Two or three days a week
for 15 to 20 minutes a session is a good
schedule to start with. As you improve,
you can increase the number of days
a week and then the amount of time
spent exercising each session. Three to
five days a week for 20 to 30 minutes
is recommended to achieve a “positive
training effect.”
Balance your activities for
a well-rounded program.
Warm up with three to five minutes of
cardiovascular activity such as walking,
then do five to 10 minutes of strength
training, and then finish (cool down)
with three to five minutes of stretching.
Perform all activities in a safe and
appropriate environment.
You can be sitting in a chair to stretch;
you can walk in an air-conditioned
mall; you can use small, manageable
hand weights; etc. Your goals should be
improved function and injury prevention.
Train for strength using
weights or resistance.
Start out light, and increase the weight
or the number of repetitions of the
activity as you improve. Resistance
training for the upper and lower body
can be performed with elastic bands
that are attached to a door or large piece
of furniture. The amount of resistance
is varied by your distance from the
attachment point and/or the thickness
of the bands. These bands are small and
portable and may be purchased from
fitness or sporting goods stores.
Get professional advice if you have
not previously participated in this
type of activity.
Check with your local YMCA, private gyms
and health clubs, physical/occupational
therapy clinics, or home health agencies
to inquire about the availability of services
that meet your personal needs and budget.
A few sessions may be all you need
to get started on a strengthening and
conditioning program that can positively
affect your life.
About the Author
(See page 60.)
91
Five Steps for Introducing Running to
Lower-Limb Amputees
T
Illustrations by Frank Angulo
Illustrations with permission from Advanced Rehabilitation Therapy, Inc., Miami, Florida
Though learning to run with a prosthesis can be very challenging, when it is
simplified into a series of relatively basic elements, it can be much easier.
Following are five easy steps that have made it
possible for me to help hundreds of people to
relearn the skill of running and to benefit from the
ability to move quickly when necessary. Initially,
for safety reasons, I strongly suggest that skilled
clinicians work with their clients and use a gait
belt.
Step 1: Prosthetic Trust
92
This step requires instilling in prosthesis users
trust in their prosthesis and confidence that it is
going to be there and not collapse when it strikes
the ground. This is accomplished by reaching
out with the prosthetic limb and landing squarely
Figure 1
Prosthetic Trust reaching out with the
prosthetic limb and
knowing it will be there.
dealing withsecondary
Preventing
your emotions
conditions
on the foot. Runners should ignore
everything else and know that their
prosthetic limb will be there.
their sound limb to reach out to complete
a full stride.
Step 2: Backward Extension
Figure 3
Sound Limb
Stride - reaching
out with sound
limb for an equal
stride length.
In this step, runners reach out with their
prosthetic foot during swing. Just before
striking the ground, the prosthetic leg
pulls back forcefully creating a backward
force. As a result, the ground will produce
a forward force accelerating their body
forward. This movement has two effects.
First, it will accelerate the body forward
causing an increase in speed. Second, it
will give runners the power to shift their
body weight over their prosthesis and
fully load their prosthetic foot, resulting in
maximum prosthetic foot performance as
they load the forefoot.
This step is focused on arm swing. The
arms and legs move in opposition to each
other, so, as the right leg moves forward,
so will the left arm. The elbows should
flex to about 90 degrees and the hands
should be loosely closed and rise to just
below chin level when brought forward.
Just as in walking, arm swing is the result
of trunk rotation as the trunk and pelvis
rotate in opposition to each other for
balance, momentum and economy of
effort.
Putting It All Together
Step 4: Stride Symmetry
Figure 2
Backward Extension
- pushing back against
the socket wall exerting a
forward force.
This step is designed to decrease the
enormous effort that these runners exert
and to help them simply relax and jog a
little. Therefore, runners should choose a
comfortable jogging pace that produces
an equal stride length for both limbs.
They should not worry about their arms;
they should instead concentrate on
maintaining stability over their prosthetic
limb using the muscles of the hips to
produce equal and relaxed strides.
Step 3: Sound Limb Stride
Figure 4
Arm Carriage
- moving the arms
in opposition to the
movement of the
legs.
During this step, the focus shifts to the
sound limb. Runners should concentrate
on taking a longer stride with their sound
limb. This can be easily accomplished
by continuing to pull down and back
through the prosthetic limb. Pulling back
during the prosthetic foot’s initial contact
with the ground initiates the movement
pattern. Runners should continue to
extend the hip by pulling down and back
into the socket. This will generate more
power and a stronger push off with their
prosthetic limb, which will, in turn, enable
Step 5: Arm Carriage
Finally, runners should be ready to put
all of the individual elements of running
together. They should relax and think
about only a couple of elements of
running with each pass.
Many long-distance runners augment
their endurance training program with
low-impact activities, such as swimming,
stationary biking or stair-climbing
machines. In time, each runner will
develop his or her own comfortable
running style, depending on the sports or
recreational activities he or she chooses
to participate in.
Learning to run can take place on just
about any type of prosthesis, and initially
the prosthetic foot is not critical. However,
if amputees decide that running is going
to be a part of their active lifestyle, they
should discuss the various available
prosthetic options with their prosthetist.
Though the same principles of running
apply, regardless of the prosthetic foot,
prosthetic feet designed for running
can reduce the effort and improve
performance.
About the Author
(See page 16.)
93
Tips to Get Fit
for Every Body
Adaptive Sports/Exercise
Resources
Achilles Track Club
212/354-0300
www.achillestrackclub.org
Adaptive Sports Association
970/259-0374
www.asadurazango.org
Adaptive Sports Center
866/349-2296
www.adaptivesports.org
Michelle Reina (Pima-Maricopa Tribe) is a certified fitness
instructor. Michelle is in her 30s and has diabetes. She knows
that being physically active can help prevent and manage
diabetes. Small, steady changes can lead to bigger changes
you can stick with. Here are some tips from Michelle on how
to become more active:
• Show up. Sometimes, the hardest step is the first one,
walking through the wellness center door or taking your first
walk around the block. You might feel shy at first. Come in!
Take that step! It won’t be hard. Just do what you can do.
• Try five or 10 minutes. Start by walking or doing a physical
activity for five or 10 minutes. Walk slowly on the treadmill.
You don’t have to set any records. When you start, the time
is not as important as just doing something. Try a walk with
your partner or children.
• Try something new. If you are going to a wellness center
and get bored, that’s OK. You don’t have to come in every day.
Walk near your home. Ride a bicycle. Go roller skating.
• See the overall picture. Some people want to get only
certain body areas in shape, like the upper arms, stomach
and hips. Set a goal to get your entire body fit. Move your
body every day. It will help you lose weight and firm up the
areas you want. You will feel better, and have a better chance
of preventing or delaying diabetes.
Michelle says you will see the benefits. Since getting fit,
Michelle has a lot of energy and has lost 50 pounds. “When I
first started being active, I was shy. I wasn’t comfortable with
myself. I didn’t like what I saw. Now I’m happy with myself. I
know I could still improve, but I’m happy.”
94
Reprinted from Indian Health Service Health for Native Life magazine.
American Amputee Hockey
Association
617/573-2633
www.amputeehockey.org/
index.html
American Amputee Soccer
Association
302/683-0997
www.ampsoccer.org
American Wheelchair Bowling
Association
434/454-2269
www.awba.org
America’s Athletes with
Disabilities
800/238-7632
www.americasathletes.org
BlazeSports/U. S. Disabled
Athletes Fund
770/850-8199
www.blazesports.com
Challenged Athletes
Foundation
858/793-9293
www.challengedathletes.org
Disabled Sports USA
301/217-0960
www.dsusa.org
International Disabled
Self-Defense Association
828/683-5528
www.defenseability.com
National Ability Center
435/649-3991
www.nac1985.org
National Amputee Golf
Association
www.nagagolf.org
National Center on Physical
Activity and Disability
800/900-8086
www.ncpad.org
National Disability Sports
Alliance
401/792-7130
www.ndsaonline.org
National Wheelchair
Basketball Association
719/266-4082
www.nwba.org
Universal Wheelchair Football
Association
513/792-8625
www.rwc.uc.edu/kraimer/
PAGE1.HTM
USA Wheelchair Tennis
914/696-7000 x 7291
www.usta.com/
usatenniswheelchair/custom.
sps?iType=6251&icustompage
id=8934
U.S. Handcycling Federation
303/679-2770
www.ushf.org
U.S. Ski and Snowboarding
Association
435/649-9090
www.usskiteam.com
Water Skiers with Disabilities
Association
863/324-4341
www.usawaterski.org/pages/
divisions/WSDA/main.htm
Wheelchair Sports USA
515/833-2450
www.wsusa.org
Wilderness Inquiry
612/676-9400
www.wildernessinquiry.org
World T.E.A.M. Sports
617/779-0300
www.worldteamsports.org
For more information, please
contact the ACA at 888/2675669.
Changing Your Lifestyle
for Better Health
I
by Scott McNutt
“If exercise could be packed into a pill, it would be the
single most widely prescribed and beneficial medicine
in the nation.”
- Dr. Robert Butler, founding director of the National Institute on Aging
Amputees, especially those whose
amputations were the result of
complications from diabetes or other
diseases, should heed Butler’s words.
Studies show that weight gain is common
for lower-limb amputees, as is reduced
physical activity. High-fat foods, added
pounds and a sedentary lifestyle put
more strain on the heart, lungs, and
circulation and increase the risk for
other complications, even additional
amputations.
High-fat foods, particularly many
varieties of fast food, are primary sources
of lipids (fatty substances in the blood).
Lipids include total cholesterol, LDL (bad)
cholesterol, HDL (good) cholesterol, and
other forms of fat, including triglycerides
(also considered bad). LDL is called
“bad” cholesterol because it deposits
cholesterol on artery walls. Conversely,
HDL blocks and removes cholesterol
deposits and transports them to the liver
to be disposed of through the bile.
Even for amputees whose health is not
impaired, significant benefits result from
maintaining a balanced diet and a regular
exercise regimen.
Charlie Steele, 59, is one amputee
who is reaping these benefits. Steele
describes himself before his amputation
as a “typical Type A personality,
putting in 10 to 12 hours a day, coming
home, getting on my computer to
do my personnel work, ordering a
cheeseburger, fries, and a Coke, plus
chocolate cake. Plus smoking. And not
exercising.”
Steele’s lifestyle led to a clogged artery
in 1987, something his doctors said he
could deal with by stopping smoking,
losing weight, exercising and eating right.
“I never quite mastered any of that stuff,”
Steele says, regretfully. “I didn’t take it all
that seriously.”
Six months later, Steele developed
diabetes. By 1990, more arteries
were clogged, and he needed bypass
surgery. The amputation of Steele’s left
leg below the knee resulted from the
circulation in his legs shutting down – a
problem caused by an allergic reaction
to the blood thinner Heparin, which is
commonly used in bypass procedures.
After the operation, Steele says,
“I had a ‘come-to-Jesus’ meeting
with myself. I said, ‘Man, this is
all my fault.’ There’s no history
of heart problems in my family,
no diabetes – it’s all lifestyle. So I
slowly started changing.”
By degrees, he weaned himself off of
sodas, sweets, whole milk, and highcholesterol foods. The adjustment took
about four years, hampered by a second
bypass.
After the second operation, Steele
entered his company’s long-term
disability program and turned his Type A
personality toward improving his health.
He began subscribing to several health
newsletters and actively searching for
information to help him deal with his
chronic conditions, heart disease and
diabetes. Staying informed about his
conditions and taking charge of his own
healthcare became a habit.
“I learned about ACA and joined it and
got inMotion, and I started going to a
Charlie Steele
support group they recommended,” says
Steele. “I started reading more articles
about diabetes and amputation, about
saving the other leg, about eating right,
about exercise for amputees.”
He also went to a physical therapist,
learned what exercises he could do alone
and in a gym, and gradually developed a
workout routine. He now exercises three
times a week, a couple of hours each
time, and tries to get in additional walks
on a treadmill. “Exercise, I tell people, is
my most important medication, and it’s
free,” explains Steele.
Today, Steele describes himself as “in
pretty good shape. When I had my first
heart surgery, my total cholesterol was
440, and my triglycerides were 1100.”
Desirable levels for total cholesterol and
triglycerides are 200 or less and 150 or
less, respectively. “The total cholesterol
right now is 123, and the triglycerides are
below 100.”
Steele, who is now an ACA Board
member, says people must find
motivations for change. “You want to be
there for your children’s weddings, your
grandchildren’s weddings?” he asks,
pointedly. “Think about that. If you are an
amputee, you probably have circulation
problems or diabetes or something. If
you don’t make any of these changes,
the odds of you living to see any of these
events are not very good.”
95
Good News About Self-Discipline
by Cecilia Kayano
L
Like many people, frybread is especially hard to resist for Linda Wiechman
(Lower Elwa S’Klallam Tribe). Not eating certain foods takes self-discipline.
With a little self-discipline, the battle with frybread can be won. Changing
eating habits takes a lot of self-discipline. We all have self-discipline!
And, we can get more!
Whenever I think about losing weight, I think
about a special woman. She is a 34-year-old
Mescalero Apache woman who self-manages her
diabetes. She works as a cook, so she is around
delicious food all day.
She is in good shape, and not overweight. Her
A1C level is 7. What is her secret? How can she
work at a restaurant and not be overweight? We
know the answer, but we might not want to tell it to
ourselves.
We know the word she is going to use when
she tells us her secret: “I deny myself the pleasure
of the moment to invest in a healthy future,” she
begins. Then she says the dreaded word: “It takes
self-discipline.”
… And a bag of self-discipline, please
96
Well, that explains why she can do it, but I can’t.
She has self-discipline, and I don’t have any. I don’t
even know where to get it! I wish, when the nurse
is handing out prescriptions, pamphlets and blood
sugar monitors, she would say, “… and here is
your self-discipline.” That sure would make things
easier! I wish she would put it in a little plastic bag
and let me carry it home.
But the nurse does not give me a bag of selfdiscipline. In fact, she rarely talks about it. No one
has talked to me about self-discipline. I think they
don’t want me to feel guilty. After all, a person who
does not have self-discipline can be looked at as
weak, sloppy or not-so-smart.
But I am none of those things. So, why is it so
hard for me to have self-discipline? I have been
examining this issue. What I have discovered
surprised me! I was right. I am not weak, sloppy
or not-so-smart. In fact, I have self-discipline. After
thinking about it, I realized everyone has selfdiscipline.
Wow! I have self-discipline!
The first step to understanding self-discipline is
to look at its meaning. Let’s make it simple: Selfdiscipline means trading now for later. We give
up the pleasure of eating cheesie chips now. We
trade it for weighing less one month later. It means
giving up a now pleasure for a future pleasure.
If I look at self-discipline in this way, I can see
that I have plenty of it. I don’t sleep in. Instead, I
go to work for the future pleasure of a paycheck. I
drive my children to basketball practice instead of
reading a book. I get the future pleasure of seeing
them win a basketball game. I wash and fold the
laundry instead of taking a nap. I get the future
pleasure of clean clothes in the dressers. By doing
these things, I can see how I am giving up now
pleasures for future pleasures.
Frybread, frybread now!
Having self-discipline in my eating habits
is different. It is much more difficult!
Saying no to eating salty, cheesie chips
or a huge piece of frybread means giving
up now pleasures for a future that is so
far away and so uncertain. Maybe that’s
why it is so hard! The now pleasure is so
immediate and makes me feel so good,
right now! And the future pleasure of
weight loss or a lower A1C level seems
far, far away.
What if the future pleasures happened
sooner? What if, immediately after not
eating frybread, I lost 15 pounds? Would
I have the self-discipline to give it up?
Absolutely!
In reality, the benefits of losing 15
pounds might not come for three months,
six months or a year. The benefits of
having eating self-discipline are so far
away, sometimes they don’t even seem
real.
Self-discipline changes to
something much easier
I think that’s why having eating selfdiscipline is so hard. But, I am learning
ways to make it easier. There are tricks
I’ve learned to get more self-discipline.
And, the best news is that the more
eating self-discipline I have, the less I
need. What starts as self-discipline will,
over time, become a habit. Having eating
self-discipline is hard. Having good
eating habits is much easier.
Where does it come from?
I have learned where self-discipline
comes from and how to get more of it.
By practicing some steps, I have gotten
more eating self-discipline and turned it
into good eating habits. First, I looked at
how much self-discipline I have. Some
people may have more than others. Here
is where self-discipline comes from:
1. Nature. Some people are naturally
more self-disciplined. They can easily
set a goal and take the steps to meet the
goals. Others may get distracted. Others
may lose focus.
2. Upbringing. Our childhood role
models help us. Some people had parents
or guardians who were self-disciplined.
The role models help children develop
self-discipline and good habits.
3. Self-esteem level. If a person has
high self-esteem, they are better able
to give up a now pleasure. If a person
doesn’t feel good about themselves, it is
hard to deny themselves something (like
frybread) that makes them feel good right
away.
4. Energy level. It is harder to focus on
the future if a person is tired. If the mind,
body or soul is tired, it wants to be taken
care of right now.
5.Amount of information. The more
a person knows about the benefits of
passing up frybread, the more they feel
good when they do it. And, the more
they learn about healthy eating, the more
“tricks” they have to help themselves.
6.Amount of human support. A person
can get self-discipline from friends, family
members and health providers. These
people can be cheerleaders and give
immediate good feelings.
How can I get more?
sleep. Be physically active. Avoid negative
people. Try to have less stress at work
and home. Do one thing every day that
makes you laugh and smile.
3. Increase information. Read about
diabetes and good eating habits every
day. Read books, magazines and
education pamphlets. Talk to someone
who has eating self-discipline. Ask them
how they do it. Learn new tricks. Keep a
daily eating journal.
4. Increase human support. Tell your
partners and friends about your goal
to lose weight or lower your A1C level.
Ask a healthcare provider, nutritionist
or fitness staff member to help you. Ask
them to weigh you and check your eating
journal.
Try saying, “I have
self-discipline!”
It feels great to start on a journey of
good health and to think about selfdiscipline. It helps to remember that we
all have it now! And, there are step-bystep ways to increase self-discipline. The
more I do it, the easier it will be. Over
time, self-discipline will become good
habits. I can stand up tall and say, “I have
self-discipline!” That sure feels good!
Reprinted from Indian Health Service
Health for Native Life magazine.
It is impossible to change numbers 1 and
2 from the above list. But, numbers 3-6
can be changed! There are steps to take
to increase self-discipline:
1. Increase self-esteem. Pray. Meditate.
Go for a walk in nature. Join in a sweat
lodge ceremony. Do traditional dancing,
singing or art. Surround yourself with
people who treat you with respect and
tenderness. And, treat yourself with
respect! Avoid negative self-talk. We are
all children of the Creator and are worthy
of good treatment.
2. Increase energy level. Get plenty of
97
Ask the Physiatrist
W
1. What is a physiatrist?
Physiatrists are physicians who specialize
in the functional rehabilitation of people
who are impaired secondary to limb
loss, back pain, stroke, and many other
disabling conditions. They are also called
“rehab docs” or “physical medicine and
rehabilitation specialists.”
Upon graduating from medical school,
physiatrists train for a year in family or
internal medicine. This is then followed
by three years of residency training in
physical medicine and rehabilitation.
This is soon followed by rigorous testing
called “boards,” resulting in “board
certification.” Physiatrists can then go on
for further training through fellowships
and “sub-board” certification programs.
A physiatrist’s expertise is defined by
his or her practice. I practice in an acute
rehabilitation hospital and, therefore, see
a greater number of people who have
had life-changing events, such as spinalcord injury, stroke, brain injury and limb
loss. Many other physiatrists practice in
multi-specialty groups or on their own
in outpatient settings where they deal
more with issues like musculoskeletal
problems and acute and chronic pain.
It is important, therefore, to seek out
a physiatrist who is “practicing” with
patients who have problems like yours.
2. Why do amputees typically
see a physiatrist?
98
The physiatrist’s role in the care of
amputees is multifaceted. In the
preamputation phase, the physiatrist is
more mindful of the patient’s functional
outcome and is thus helpful with advising
on the level of amputation. He or she
can also try to implant in the patient a
vision of what can be achieved after
amputation. In the postsurgical phase,
the physiatrist oversees the patient’s
initial rehabilitation and the healing
and shaping of his or her residual limb.
The physiatrist then works with the
healthcare team to prescribe a prosthesis
and further rehabilitation services, while
monitoring medical issues, functional
progress and team coordination. Longterm follow-up by the physiatrist is
important for maximizing and maintaining
the patient’s functional outcome. This
includes being aware of the full person
and his or her medical, social and
avocational/vocational issues.
3. Are amputees at greater risk
for osteoporosis?
Osteoporosis is a thinning of the bones
from a loss of the minerals that help to
“stock” them. If we use the analogy of
the bones being a bank, we can only
make deposits that build bone stock
until we are about 25 years of age. If we
have had healthful nutritional habits,
we should have strong, healthy bones.
As we age, there is a slow withdrawal
of these deposits or thinning of our
bones. This thinning is accelerated
through poor nutritional habits, smoking,
alcohol and, for women, menopause. If
we have “rich,” healthy bones, we can
weather the withdrawal of bone deposits
without a problem. If we have poor bone
stock to begin with, the withdrawal of
deposits that occurs with normal aging,
menopause, or poor nutritional or social
habits can lead to a critical bone-thinning
level. At this point, the bone will fracture
easily, especially at key weight-bearing
points, such as the hip, spine and wrists.
Osteoporosis is more prevalent in
women, especially those who are fairskinned. This is one of the risk factors
for osteoporosis, and the more risk
factors you have, the greater your chance
of having it. Unfortunately, being an
amputee is also a risk factor.
Bones are strengthened by bearing
weight against the gravitational pull of
the earth and the pull of the muscles
they are attached to. As a result, we have
found that too much bed rest or walking
in outer space causes an acceleration
of osteoporosis. Thus, for amputees,
a decrease in activity, especially the
reduction of weight bearing and muscle
use through the residual limb during
walking, causes an accelerated loss of
bone-mineral density.
Amputees can, however, take proactive
steps to limit the detrimental effects of
bone thinning. When possible, walking
and other weight-bearing activities are
helpful, while focal strengthening of the
muscle groups also places a healthy
stress on the bones involved and
strengthens them. In addition, the use of
calcium supplements with vitamin D is a
standard for bone maintenance therapy,
and agents that help alter bone-cell
turnover have been found to be helpful.
Unfortunately, no cure or definitive
treatment has been found that will significantly reverse the losses that have
occurred.
4. I am a bilateral leg amputee
and usually use a wheelchair.
I am losing my muscles in my
residual legs, I often have skin
problems from sitting so much,
and I often have shoulder pain.
I have gained weight since my
amputation and am not able to
walk in prostheses. Is it too late
to get my life together again?
It is not too late. You are dealing with
a number of issues that an “amputeeoriented” physiatrist should be able to
help you with. The human body is quite
resilient. Physical therapy should be
able to help with strengthening your
residual limbs and addressing your
shoulder complaints. Further evaluation
of your wheelchair or “seating system”
and perhaps the use of computerized
mapping to identify pressure areas when
you are sitting would help address the
cause of your skin problems. Training by
a therapist would include weight shifts to
relieve sitting pressures, proper transfer
techniques, and community re-entry
activities. So much is possible, including
weight loss. You just need to get started.
5. I am in my 60s and have used
bilateral leg prostheses since
I was in my 30s. Recently, I
seem to get very tired and out
of breath when I walk. What
should I do?
Shortness of breath can be caused
by something as mild as being “out
of shape” to something as serious as
“drop dead” heart disease. There is no
time to waste; you need to go directly to
your cardiologist or your internist to be
thoroughly evaluated. You have the same
risks as other 60-something-year-olds.
This means that you also should have all
of the other routine screenings that need
to be done at your age, such as those for
high blood pressure, prostate cancer and
colon cancer.
If you are cleared, it will be important
to maintain your strength and endurance
to continue the level of function you have
enjoyed. As we get older, we lose our
reserve strength and endurance. With
your doctor’s permission, you need to
do regular exercise, including aerobic
training, strengthening and stretching, to
keep going strong.
your remaining limb, your vulnerable
upper limbs, and your back. A physical
therapist can help you develop a regular
exercise program to accomplish this.
Second, you must follow through with
this program compulsively. Third, you
need to study your routine activities to
see if they can be done in ways that are
more efficient and less stressful on your
body, especially the upper extremities.
The philosophy can be stated simply
as “conserve it to preserve it.” This
can include the use of power mobility
equipment for long-distance activities
and other adaptive equipment.
7. I want to avoid other physical
problems related to my
amputation. What is your best
advice?
6. I am an above-knee amputee
and use crutches instead of a
prosthesis. What should I do to
prevent or minimize long-term
problems from using them?
Our bodies are designed to bear weight
and walk with our lower extremities.
Our arms, including our shoulders, are
designed for more delicate work. Thus,
the use of crutches and your arms to
fulfill the legs’ function stresses the body.
There are two types of crutches:
“axillary” crutches, which shift the weight
bearing to your shoulders, and “forearm”
crutches, which shift the weight bearing
to the wrists, elbows and shoulders.
In time, the cumulative stress of this
weight bearing will cause irritation to
these joints, leading to tissue injury,
accelerated joint degeneration, pain, and
loss of function.
To prevent or minimize these
problems, you must get educated about
how to maintain a strong body with
a focus on preserving the function of
•Love your residual limb. This means
maintaining excellent hygiene of your
residual limb, keeping your prosthetic
socket clean, monitoring your skin
closely for areas of irritation, and
maintaining a continuous custom socket
fit to prevent any skin breakdowns early.
You will also want to develop a close
professional relationship with your
prosthetist and/or physiatrist.
•With your doctor’s permission,
maintain a regular exercise program
designed for your individual needs,
including convenience (because
convenience leads to compliance). This
program should include strengthening
and stretching of the entire body and
aerobic exercises, such as using the
treadmill and swimming, to prevent
upper-arm, neck and low-back sprains
and strains that commonly occur from
the stress caused by altered body
mechanics after amputation.
• Stay connected. You need to be part
of a limb loss peer group to share
experiences, resources and laughs. This
will help you learn how to help yourself
and others and will help motivate you to
take care of yourself.
About the Author
(See page 9.)
99
Risky Business
The Potentially Dangerous Consequences of Choosing Not to Wear
Your Lower-Limb Prosthesis
A
A phone message from a lower-limb prosthesis user saying “I’ve had a fall”
is never taken easily by a physiatrist. The range of possible injuries – a
wounded ego, a skin opening in the residual limb, or a major fracture, for
example – run through my mind as I return the call.
100
The extent of the injuries is important because
they could suspend the independence the person
gets through the use of his or her prosthesis while
he or she is healing.
Although such falls and subsequent setbacks
are common for amputees, once I find out if the
person is OK, the inquisition begins. My next
question, of course, is, “How did this happen?” It’s
often because the person decided, for whatever
reason, not to wear his or her prosthesis “this time.”
Of course, not wearing his or her prosthesis will
not always result in a fall or injury, but it can. Still,
many prosthesis wearers choose to not wear their
prosthesis at times.
The reason a person makes this choice is
usually unique to the individual and the particular
situation. It is often the same reason that I had no
shoes on one morning when I stepped on one of
my son’s LEGO building blocks while I was going
to shave. I don’t wear shoes to bed, I hate slippers,
and I keep the lights off to keep from disturbing
my wife in the early hours of the morning. And
boom! I’ve twisted my ankle, landed on the floor,
shaken the house, and shattered the peace of my
sleeping family. But it seemed reasonable at the time!
The bottom line is that there are reasons for,
risks to, and consequences of not wearing your
prosthesis.
Preventing
your emotions
conditions
The Reasons
One reason people don’t wear their
prosthesis is comfort. In the privacy of
your home, you don’t have to lug around
a heavy, uncomfortable limb anymore
than I have to wear my shoes, belt or tie.
You are free to be comfortable without
the stares of friends and strangers.
There’s no need for vanity at home, right?
Another reason people choose not
to wear their prosthesis is pain. Getting
comfortable also makes sense when
you have skin irritation in your groin,
knee, lower abdomen, or anywhere else.
Prosthesis users often have pain in their
residual limb or other body parts after an
extended period of wearing “the leg.”
Thus, to be free of “the leg” can mean
being free of the pain. They also may
choose not to wear their prosthesis for
a while to try to avoid crossing over into
the “I’ve had it on too long” period to
begin with.
Not wearing the prosthesis might
also simply be a matter of convenience.
It might be my choice to risk my safety
so that I can conveniently get from my
bedroom to the master bathroom. Or I
might not even consider the trauma that I
might suffer if I don’t turn on the light, put
on my footwear, and ensure that my path
is clear. I might just want to do what’s
convenient and not even think about the
risks.
To take a chance seems very reasonable when the risks seem low. To put all
of that cotton, gel, metal and plastic on
and to pull, squeeze, snap, lock, click, and
Velcro a prosthesis on just to urinate in
the wee hours of the morning does not.
The Risks
As long as prosthesis users are minimally
impaired, care about their safety, and are
not doing stunts and acrobatics, the risks
should be low if they choose not to use
their prosthesis for intermittent periods.
Unfortunately, this is often not the case.
A large number of prosthesis wearers
have significant other medical problems,
such as diabetes, which can impair
their vision, their sense of position, and
their balance. It is these not-so-obvious
impairments that become so obvious
when you’re in midfall. Then, it’s too late.
Other risks of moving around without
your prosthesis may not be as evident as
the risk of a fall. When you’re hopping,
jumping, sliding or banging from one
location to the other, however, you can
also stress and injure a number of
joints, including your hips, knees, feet,
shoulders, elbows, wrists, hands, neck
and lower back. And don’t forget that
these joints don’t “stand” alone. They
are always working “in cahoots” with
their associated ligaments, tendons and
muscles. I can imagine the sound of
them ripping and tearing as someone
repetitively hops and jumps around with
or without his or her crutch, cane or
walker. It’s called cumulative trauma from
“abnormal biomechanics.”
Skin, “the packaging,” is at risk as well,
either from acute trauma or cumulative
trauma. Although those who are healthy
and unimpaired may be able to withstand
some of the skin’s bumps and scrapes,
the truth is that most of the trauma is
occurring under the dead outer layer
of skin. The soft tissue that is pinched
between a hard surface outside and
the hard bone inside falls apart when
crushed against the bone. We see a
bruise outside, but inside is a mess of
ripped up cells, tissue, and blood vessels
that need time to repair. For those with
diabetes, however, the skin sensation
may be so impaired that they don’t feel
the ripping and tearing of the tissues
under their skin. They may, therefore,
continue to hop and bounce around until
a major hole or thick callous forms.
Unfortunately, the ability to heal is
also diminished in people with diabetes.
It happens slowly, and the person
often battles infection. If he or she is
fortunate, the infection is caught during
the early, superficial stage and is treated
aggressively. By aggressively, I mean with
close medical supervision (not home
remedies), which usually includes the
use of antibiotics, the use of frequent
dressing changes, and the loss of the
use of the prosthesis until the infection
is eradicated and the skin is closed and
healed.
That’s correct. Their privilege, their
right, and their choice to use their
prosthesis is totally suspended once the
skin is damaged (reddened, blistered,
opened) even if there is no infection. The
table has turned, and the risk is now in
wearing the prosthesis over damaged
skin, rather than in not wearing it.
Damaged skin is vulnerable and more
damaged in the deeper layers than
the eye allows a person to believe. The
red spot becomes a blister, the blister
becomes a sore, and the sore becomes
deep and infected. At this point, it can
quickly and quietly go to the bone.
Then, it’s very difficult to cure. The risk
becomes one of limb (yes, the need
for further amputation) and of life (yes,
deep bone infections can quickly spread
throughout the entire body). Although
this process can occur in healthy, young
nondiabetics as well, for those with
diabetes, it can occur very rapidly and be
very dangerous and costly.
Egos can be repolished; minor bumps
and bruises can heal. But when bones
break, shoulders (rotator cuffs) tear, and
skin is opened, my patient and I are in
for the long haul of recovery. Often, this
involves the loss of the patient’s freedom
to choose. When his or her residual
101
limb is injured, the patient no longer has the choice to wear
the prosthesis. The consequences of the injury include further
limits on his or her independent mobility and usual activities,
pain, and healthcare bills for such things as bandages, therapy,
medication, and physiatrist visits. Once it has happened, it all
seems clear to “the Monday morning quarterback.” It’s essential,
though, that the regret, depression, and learned lessons occur
before we get our next chance to take “the risk.”
Things to Think About
As a physiatrist who works with many prosthesis users, I
usually hear from patients after they have been injured. In this
case, however, I would like to offer the following suggestions to
try to prevent some of these injuries from ever happening:
• If you can’t or won’t wear your prosthesis at times, think
first and assess the risk. Can you use crutches, a walker, a
wheelchair, a bedside commode, assistance from someone
else, a clear path, a lighted path, handrails, or bars to help
ensure your safety?
• Always be prepared for times when you are not able to use
your prosthesis. Set up your immediate world so that you
will be able to function with or without it.
• Be aware that medications and/or alcohol can impair your
senses (touch, balance, judgment, etc.) and other bodily
functions. This may be especially dangerous when you are
not wearing a prosthesis.
• When you are preparing to put on your prosthesis, check
your skin first. Even a quick check is better than none.
If your skin is possibly injured, have it checked before
proceeding with the use of your prosthesis.
• When using your prosthesis, use it correctly. Make sure that
you are using the appropriate socks, liners, and suspension
aids, and make sure that the prosthesis is fastened and fitted
properly. Incorrect use can turn this device into a weapon of
destruction.
• Develop close professional and support relationships with
your physician, prosthetist, therapist, podiatrist and other
prosthesis users. When you need to ask a question or
seek help, it is important that you have resources. Insist
on having these relationships. In this age of information
and communication, there are many ways to establish and
maintain these contacts. Remember, others may need your
help as well.
• Use professional organizations like the Amputee Coalition
of America to increase your knowledge, support, and sense
of connectedness. You are not alone; your experience is a
shared one.
About the Author
(See page 9.)
102
Before You Fall
Tips for Preventing Falls
in the Home
Your home may be your haven, your castle, and your
favorite place in the world. It can also be safe for you
after your amputation, if you look around and follow
these tips to keep from falling:
• Remove throw rugs and secure large
area rugs with carpet tape or tacks.
• Rearrange furniture to allow enough
room to navigate.
• Position heavy furniture so that there
is something to grab if you begin to fall.
• Leave a light on at night.
• Wipe spills immediately.
• Reduce clutter.
• If thresholds cause problems, have
them lowered or removed.
• Move any furniture that has sharp
edges away from main pathways.
• Use a shower chair with arms.
• Have handrails and grab bars installed
in bathrooms.
• Use nonskid strips or mats for inclines,
stairs, tubs and showers.
• Adjust doors with automatic closures so
that they do not bump you from behind.
• Move telephone and extension cords
from the traffic areas.
Other things you can do to prevent falls include:
• Review your medications with your doctor
or pharmacist; some medications can make
you dizzy or sleepy or affect your balance.
• Have your vision checked every year.
• Rise slowly after sitting or lying down.
• Exercise regularly to increase your strength
and improve your balance.
Improving Your Balance to Prevent Falls
L
by Melissa Wolff-Burke, PT, EdD, ATC, and Elizabeth Cole, PT
Losing a limb changes everything, including your center of mass. As a
result, it affects your balance and can put you at greater risk for falls.
When all four limbs are intact, your center of mass
is located at just about the middle of your pelvis.
Losing a lower limb moves that center a bit higher,
forward, and to the side of the remaining sound
limb. From now on, your brain and body will make
numerous spontaneous adjustments to correct
for the change in mass. However, maintaining
your balance, with or without a prosthesis, takes
practice and focus on how and where you are
moving. In addition, it takes extra energy to walk
with a prosthesis and/or an assistive device. Your
fitness and balance confidence will, therefore, play
a large role in how well you return to your optimal
function.
How confident are you in your balance, with or
without your prosthesis (if you use one)? People
with lower-limb amputations may experience
a loss of balance confidence, even if they have
never fallen. Using an assistive device, being
afraid of falling, and concentrating on walking can
all affect your balance confidence.
By filling out the Activities-Specific Balance
Confidence (ABC) Scale on page 105 now, you will
be able to get an idea of the activities that do not
give you much trouble and those that you need to
work on improving.
Once you have identified your problem areas,
you can begin balance-challenge exercises from
your bed or chair or while standing in the kitchen
or in the middle of a room to improve your balance
confidence. Some of these exercises can be done
without a prosthesis. Their purpose is to get your
brain and your body to automatically make the
required adjustments when you shift your center
of mass away from midline.
Practice makes perfect, but only if the practice
is perfect. You want to keep trying these activities
until you get them right. Keep in mind that you are
trying to test the limits of your ability WITHOUT
creating a dangerous or potentially dangerous
situation for yourself. You should only practice
these activities with assistance or in a protected
environment so that if you lose your balance, you
will not injure yourself.
Seated Balance
Activities
Sit upright on whatever
surface you are on with
your weight evenly
distributed over both
sit bones. Use your
stomach muscles to
pull your belly button
103
toward your spine.
Keep your breathing
steady. Do not
hold your breath.
Think of growing
taller/longer while
you are sitting.
Make this activity
more difficult by
raising your arms
overhead, first
slowly then quickly. Reach your arms out
to the side then
reach them out
diagonally. Focus
on controlling
your movement
and maintaining
good posture.
Standing Balance Activities
104
If you are missing a leg, you must rely on
your remaining sound leg for balance
when standing. Practice until you can
comfortably stand on it without support
The next step is to
learn to take weight
into the socket of
your prosthesis.
While standing at
the kitchen counter
or between two
high-backed chairs,
bear weight through
your upper and
lower extremities, then shift more weight
onto your prosthesis. Work on shifting
your weight from side to side, forward
and backward, and from the toe of one
foot diagonally toward the heel of the
opposite foot. These
activities can be made
more challenging by
placing a foam pillow
or other soft surface
under your feet. To
emphasize weight
bearing into the
socket, it is important
to avoid forward,
backward or side
Photo by Dennis Cole
bending of your trunk. When performing
this activity, concentrate on moving your
shoulders and hips as a unit.
When you step forward or backward
with either leg, you should do so with a
steady motion with you in control of your
trunk and limbs. Emphasize contracting
the muscles of the standing leg. Become
aware of the feeling of tightening the
muscles within your socket so that you
control the motion of the socket rather
than it controlling you.
Reaching to
the side and
overhead can
be practiced at a
counter. Become
aware of “a point
of no return”
when the body’s
weight shifts too
far in any direction and could result in a
fall. Look up while
you are doing these
activities to “feel”
the placement of
the prosthetic foot
rather than see it.
The bad habit of
looking down while
walking is a difficult
one to overcome
and may contribute
to the loss of balance and falls. Learning
to balance while side-stepping and
walking backward is important because
people rarely walk in a straight line at
home, especially in a small kitchen or
bathroom. Taking small steps and using
a foot flat position will help ensure that
your prosthetic knee does not bend
accidentally.
Standing on the
prosthesis only is
one of the most
difficult skills to
learn. Try stepping
onto a low step with
the sound foot. Bear
weight through your
prosthesis and your
arms while raising the sound foot onto a
step. The prosthetic foot should not leave
the floor. The lower the step, the easier it
will be to perform this activity. You should
practice this until you can, with your eyes
forward and with control, place your
sound foot on a 2-inch step. This balance
activity can be made more challenging
by gradually increasing the step height
up to 8 inches or by lifting one hand then
both hands off of the counter. The ability
to perform this exercise slowly with trunk
and prosthetic control is critical to safe
and confident walking. A more advanced
activity is to place a tennis ball under the
sound foot, while bearing weight inside
the prosthesis.
These exercises
can be repeated
in the middle of a
room away from
obstacles. Pay
attention to safety
by initially having
someone assist
you. Though often
neglected, such
tasks as reaching,
tucking in a shirt, or holding a cup of
coffee without additional support are
worthwhile balance activities.
Most of the previous activities have
been static,
meaning that your
feet stay in one
place. Once you
have mastered
these activities,
you are ready
to improve your
balance confidence by working on
moving balance activities.
Braiding is done
by crossing one foot
over the midline and
moving forward.
You can do this
while holding onto a
chair. Tai chi is also
an excellent way to
improve your balance,
Photo by Dennis Cole
Preventing
your emotions
conditions
and you can find numerous videos on
tai chi on the Internet (try www.google.
com – then type in “tai chi video”). Venture
outside and walk on pebbles, grass or dirt
surfaces. Be sure to have some assistance
until you get the feel for how these
surfaces can challenge your balance.
Conclusion
Remember that perfect practice makes
perfect. Fill out the ABC Scale again to
see how much you have improved. If
some activities still cause you difficulty,
consider consulting a physical therapist
to help you reach your goals.
Caution: Always consult a physician
before beginning any exercise program.
Activities-Specific Balance Confidence (ABC) Scale
Instructions: Rate each activity 0-100% according to your level of confidence in
performing the activity, with 0% meaning NO CONFIDENCE and 100% meaning
HIGHEST CONFIDENCE.
Today with a Today without
prosthesis
a prosthesis
2. Walk up and
down stairs
3. Pick up a slipper
from the floor
4. Reach at eye level
5. Reach on tiptoes
6. Stand on a chair
to reach
Archives of Physical Medicine
and Rehabilitation
7. Sweep the floor
Clinical Rehabilitation
Journal of Gerontology and Biological
Science
Journal of Orthopaedic &
Sports Physical Therapy
Physical Therapy
A special thanks to the people in the
photos for their support of the amputee
community and Shenandoah University
students and to Sandra Tibbs for her
clinical ideas.
About the Authors
Melissa Wolff-Burke, PT,
EdD, ATC, is director of
clinical education and
assistant professor in
the Division of Physical
Therapy at Shenandoah
University in Winchester, Virginia.
Since 1989, Elizabeth
Cole, PT, has been
teaching amputees
how to walk, run
and parachute from
airplanes in Austin,
Texas.
Later date
without a
prosthesis
1. Walk around the
inside of the house
References
Clinical Orthopaedics
Later date
with a
prosthesis
8. Walk outside to a
nearby car
9. Get in/out of a car
10. Walk across a
parking lot
11. Walk up and
down a ramp
12. Walk in a
crowded mall
13. Walk in a
crowd/bumped
14. Use an escalator
while holding the rail
15. Use an escalator
while not holding the
rail
16. Walk on an icy
sidewalk
TOTAL
Balance Confidence
Score =
Total divided
by 16 in %
Results: A score of lower than 80% indicates that you may benefit from balance
education and exercises to increase your balance confidence. When you fill out the
scale at a later date, a change of +/- 6 points indicates a significant change in your
confidence.
Reference: Powell LE, Myers AM. “The Activities-Specific Balance Confidence (ABC) Scale.”
Journal of Gerontology and Biological Science. 1995,50:M28-M34
105
More Than a Missing Limb
Dealing With Back, Hip, Knee and Shoulder Problems
W
by Scott Waite, MPT
When you are missing a limb, your
problems can go far beyond the fact
that you are missing an arm or a leg.
If, for example, you have a preexisting
condition, such as decreased circulation
in your extremities, or if you experience
increased pressure on your residual limb
because of a poorly fitting prosthetic
socket, you may experience additional
problems in that extremity. These potential problems include skin breakdown,
infection, and even the need for another
amputation higher up on that same limb.
But your problems don’t necessarily
even end there. That missing limb can
also lead to a wide variety of additional
physical problems and impairments
unless you take steps to prevent them.
The absence of a limb may, for example,
impair mobility on the affected side,
which can then lead to an overuse,
compensation or repetitive movement
injury in the remaining sound limb or in
another part of your body. Four areas that
are commonly affected are the back, hip,
knee and shoulder. And these injuries
can really be a pain – both figuratively
and literally.
Back Problems
106
Because the back is so willing to “help
out” during daily activities, it is easily
injured. The back (usually the lower
back) tries to compensate for decreased
or abnormal motion of the legs during
walking, and this added stress is
sometimes more than the back can handle.
If you use a prosthesis, it is, therefore,
crucial that you learn to walk properly
with it. By making sure that your
prosthesis fits properly and doing gait
training with a physical therapist, you can
help ensure that you walk in a way that
minimizes any negative forces on your
back.
Though trunk stabilization and
strength are important for everyone, they
are even more critical for someone with
a lower-limb amputation. A back that is
stable and strong is much less likely to be
injured.
Those who use wheelchairs can also
develop back problems due to constant
static positioning of the trunk, which can
result in muscle tightness. Maintaining
erect posture, stretching your trunk
muscles, learning to use your lower
extremities whether they are sound or
prosthetic, and focusing on exercises for
the stomach and back will help you avoid
these problems.
Hip and Knee Problems
It is also fairly common for those with
a lower-limb amputation to have hip or
knee pain in their residual or sound limb
as a result of a poor walking pattern or
constant positioning.
Immediately after a limb amputation,
the body quickly attempts to decrease
its use of the residual limb because of
pain or apprehension. Unfortunately, this
attempt to protect the residual limb can
be detrimental to the sound limb.
When people who use a leg prosthesis
swing their leg on their prosthetic side
unnaturally to move their prosthetic
leg forward, they can injure their hip. In
addition, when they try to avoid putting
weight on their residual limb to protect
it, they often put increased weight
on their sound limb. This additional
weight can cause injury to their knee.
Today, prosthetic limbs are made to be
functional, not to be used as a crutch or
an assistive device. Unfortunately, people
who don’t know how to walk properly
with their prosthesis sometimes use it
like a weight-bearing crutch.
Walking with good, equal weight on
the sound and prosthetic leg will assist
in decreasing hip and knee pain and
perhaps decrease the chance of more
debilitating injuries. Physical therapy
to work on gait training and improving
muscle balance can help you achieve
such a symmetric walking pattern.
In addition to using your prosthesis
properly, it is essential that you increase
your stability and strength in both your
residual and sound limb and establish
good muscle control in both regardless of
the length of your residual limb.
Amputees who use wheelchairs can
also develop hip and knee problems due
to constant static positioning of their
trunk and lower extremities, which can
result in muscle tightness. Hip and leg
range-of-motion exercises for those who
walk and those who use wheelchairs
will help you decrease soreness and
tightness in your joints.
Shoulder Problems
Overuse and repetitive motions generally
cause most shoulder pain, and this
pain can be initiated or exacerbated by
an upper-limb amputation. Shoulder
problems may occur as a result of
increased use of the sound limb or
constant motions of the residual limb
due to prosthesis use. The discomfort
or tightness commonly felt between the
shoulder and neck in conjunction with
shoulder pain can be very problematic.
Overhead activities, whether performed
daily or during the occasional “weekend
painting project,” can increase shoulder
pain, especially if the person has
neglected stretching, strengthening and
stabilization exercises of the shoulder
muscles, primarily the rotator cuff.
Stretching before and frequent breaks
during upper-body activities can help
decrease overall shoulder pain. In
addition, a slow, progressive exercise
program that does not increase pain
during the exercise, but which may
result in a feeling of muscle fatigue
for one to two days, should aid in
decreasing overall pain. Amputees who
use wheelchairs, especially manual
wheelchairs, should focus on shoulder
and arm strengthening exercises as
directed by your healthcare provider
to assist in reducing pain that may
have been caused by propelling your
wheelchair.
General Information
Ideally, extremities should be used
equally to keep your joints free from
pain. Proper muscle function will help
strengthen your muscles, prevent injury,
and alleviate joint stress.
In addition, an active exercise
program that includes stretching and
strengthening will help prevent injury
and allow good blood flow to maintain
healthy joints. The key is to start slow
and work your way up to performing
daily activities and exercises that help
reduce the pain in the part of your body
that is hurting. Though amputees have an
increased chance of having joint pain in
certain areas, it can be prevented or dealt
with through commitment to an exercise
program.
Tips to Help With Joint Pain
• Stretch before any activity.
• Establish a good exercise program,
especially one devoted to your
problem areas. (Inquire about
aquatic exercises, which can be
easier on the joints.)
• Be aware of your posture, whether
you are at rest or active. Ask yourself questions like, “How’s my posture? Am I standing up straight, or am I slouching, putting extra stress on my back? Where is my weight in standing? Is it on both legs equally,
or am I shifting my weight often
enough to relieve stress on the joints?”
• Get proper education and therapy in walking with prosthetic legs, using prosthetic arms, using a wheelchair,
and/or increasing functional
independence of your residual limbs.
• Maintain a well-balanced diet, and inquire about a weight-reduction
diet with a physician if you are
overweight. (Obesity is a major cause
of weight-bearing joint pain.)
• Understand that if certain exercises
tend to increase pain while you
are doing them or afterward, those
exercises may be doing more harm
than good. If you have this experience,
notify your therapist or doctor.
• Consult a physician about pain management options, especially if
you have severe or chronic pain. Don’t
just suffer in silence.
Prevention
Unfortunately, the idea of preventing
physical problems and pain has not
been well-received by health insurance
companies in the past because they
do not see a clear cost benefit. For this
reason, they are unlikely to pay for the
amount of physical/occupational therapy
and gait training that patients really need.
Still, amputees who have no joint pain
can do a variety of things to decrease
the chance of further medical problems.
The previously mentioned tips are a good
beginning. In addition, it is important that
you start listening to your body to get a
good understanding of how it is holding
up to your daily activities.
Conclusion
Today, amputees have a better quality of
life and better physical abilities than they
did in the past, regardless of whether
they are elite athletes or older people
with diabetes who use a wheelchair.
Learning to prevent or deal with back,
hip, knee and shoulder pain is a crucial
part of gaining as much independence
as possible. Understanding that you can
live without the constant fear of injury
or constant joint or muscle pain is a
good start. Doing something about it is
the next step. You should contact your
physician or physical therapist to help
you establish a treatment plan for your
specific concern.
Caution: Consult a physician before
beginning any exercise program.
About the Author
Scott Waite, MPT, is the
director of Physical
Therapy Services for
Fourroux Orthotics
& Prosthetics. Waite
specializes in prosthetic
gait training and idiopathic scoliosis
bracing. He also consults patients with
recent amputations. Waite received his
Bachelor’s Degree in Biology and his
Master’s Degree in Physical Therapy.
He has been treating people with
amputations for the last four years.
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Treating the Whole Person
The Importance of Orthotics in the Care of Amputee Patients
W
by Robert (Bob) A. Bedotto, PT, CPO, CPI
When a person is missing a limb or more than one limb, he or she will likely
have numerous additional problems, including back, knee and hip pain, as
a result of that missing limb and/or the use or misuse of an artificial limb
(prosthesis). All of these needs must be addressed if that patient is to return
to life successfully.
A splint is a temporary device used
to prevent motion at a particular joint.
Modern terminology describes orthoses
by the joints they span; therefore, a foot
orthosis is an FO; an ankle foot orthosis
is an AFO; a knee ankle foot orthosis is a
KAFO; etc.
Orthoses can be custom-fabricated like
prostheses or prefabricated “off the shelf”
devices; which is used will depend on the
patient’s individual need.
When Is an Orthosis Needed in
Prosthetic Treatment?
As a physical therapist, a prosthetist, and an
orthotist, I am directly involved in all of these
aspects of treatment. Physical therapy can certainly
help the patient avoid or deal with many of these
problems. And in many cases, the use of an orthotic
device, such as a brace or splint, would also be
beneficial.
What Is an Orthosis?
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An orthosis is an external appliance that is applied
to the body to restrict or assist motion. It can also
be used to support weak muscles, to prevent or
correct injuries or abnormalities, or to transfer load
from one part of the body to another.
Orthoses (the plural of orthosis) are commonly
referred to as braces, splints or supports and
include a wide variety of appliances. Generally, a
brace is rigid, and a support is soft or semi-rigid.
The goal of rehabilitation is to restore
individuals to their former capacity or
to the highest level of function possible.
Therefore, replacing a missing limb or its
function with a prosthesis should be only part of
the overall treatment of the amputee patient. Total
treatment should also include proper assessment,
physical therapy, training, and, in many cases,
orthoses.
Though the importance of a prosthesis for
restoring function after amputation is usually
obvious, the need for an orthosis is often not as
obvious. An orthosis may, however, help enhance
the patient’s use of a prosthesis by treating the
patient’s secondary conditions that are separate
from the amputation or that were caused by the use
or misuse of his or her prosthesis.
Vascular disease, for example, is a major cause of
amputation and is often associated with diabetes.
As a result of diabetes, patients may also develop
neuropathy, which causes reduced sensation and
muscle weakness. Left untreated, neuropathy can
Preventing
your emotions
conditions
limit the patient’s ability to function. When
a person has one leg amputated as a
result of diabetes or vascular disease,
his or her other leg may have preexisting
problems as well and might benefit from
orthotic treatment.
In addition, even if the amputee’s
remaining leg is healthy, it will have to
work harder to compensate for his or her
amputated leg, which can lead to undue
damage to it as well.
Another common cause of limited
function among amputees is their physical
condition at the time of prosthetic
fitting. They might have range of motion
problems or muscle weakness from
disuse or prior bad habits. Unfortunately,
physical therapy for long-term deficiencies
might not be sufficient alone to restore the
patients’ function.
Physical deficiencies can also result
from prosthesis use. A prosthesis is a
mechanical system that must include the
proper fit, alignment and components for
maximal function and safety. The system
must enable the individual to function
as normally as possible so that he or
she will avoid dependence on his or her
remaining limb. If the prosthetic system
has any deficiencies, it can affect the body
adversely and, over time, limit function.
In these cases, orthotic intervention
is essential. Unfortunately, the use of an
orthosis is too often an afterthought or a
last resort treatment only when a problem
reaches an advanced stage. Ideally, we
should provide preemptive orthotic
treatment from the beginning to prevent
these problems or at least to minimize
them as much as possible.
Feet, Ankles and Knees
The vast majority of single-leg amputees
would benefit from a foot orthosis to help
preserve the function of their remaining
leg. For best results, a treatment plan
should address both potential and existing
problems.
When weakness and/or limited motion
is present at the ankle or knee, an AFO
may be needed to support weak muscles
and restrict unwanted motion. Even in the
absence of weakness or limited motion,
however, tremendous pressures are
being exerted on the foot and ankle. A foot
orthosis may be necessary to minimize
the effect of these pressures and to
maintain proper alignment.
Overuse Injuries
The overuse of assistive devices, such
as crutches, walkers and wheelchairs,
can also cause problems that may
require orthotic treatment. Carpal tunnel
syndrome, tendonitis of the elbow, and
rotator cuff problems of the shoulder are
examples of repetitive-use syndromes.
Physical therapy in conjunction with
the appropriate orthosis can help. A wrist
orthosis (WO) that supports the wrist and
limits motion is effective in treating carpal
tunnel syndrome, and a simple elbow
strap that applies pressure to the muscle
and tendon that are causing pain will
provide some relief for tendonitis.
Back Pain
Low back pain is prevalent and is
exacerbated by an inadequate prosthesis
and/or poor physical condition. Again, the
use of corsets, binders or other types of
orthotic supports should be incorporated
into physical therapy treatment. It is,
however, important to consider all of the
factors that contribute to the problem
in order to find the solution. Just as a
prosthesis is not a total solution in itself,
neither is an orthosis. Total treatment of
the whole person is always indicated.
Lifestyle Injuries
Finally, a variety of injuries can result
from a very active lifestyle. Advances in
prostheses have enabled amputees to
engage in activities that were not possible
many years ago. As a result, injuries
resulting from accidents, athletic activities,
or aggressive exercise will require
treatment that may include orthoses.
Prevention is the best cure. A postural
evaluation and preactivity screening
are advisable. Preventive treatment that
includes a foot orthosis may also help
prevent potential injuries. Again, this
should be part of a total treatment plan
that includes physical conditioning and
the proper equipment, including the
prosthesis. The proper footwear can also
contribute to the prevention or correction
of deficiencies and should also be
considered as othoses.
What Does This All Mean to Me?
The most important aspect of total
treatment is the active participation of
the patient. Understanding your options
in treatment is the critical first step. This
requires information and education.
You should investigate all of your
options, and orthotics and prosthetics
should not be considered exclusive
of each other. Along with prosthetic
technology, proper fit, and physical
conditioning, orthotics may be essential
to your rehabilitation. If you feel that you
might benefit from orthotic treatment,
tell your prosthetist or physical therapist.
Don’t wait for him or her to suggest it. It’s
your job to make sure that your healthcare
team treats the whole person and doesn’t
just replace your missing limb.
About the Author
Robert (Bob) A.
Bedotto, PT, CPO, CPI,
is a rehabilitation
specialist with 35
years of experience.
He combines his
expertise as a
physical therapist,
prosthetist/orthotist and certified Pilates
instructor at Ortho-Therapy, LLC, at Bray
Orthotics & Prosthetics in Westwood, New
Jersey.
109
Ask the Pedorthist
Answers by Seamus Kennedy, CPed
W
1. What is a pedorthist? By strict definition, pedorthics is the design,
manufacture, modification and/or fit of footwear, including shoes, orthotics
and foot devices, to prevent or alleviate foot problems caused by disease,
congenital defect, overuse or injury.
That comes across as a bit of a mouthful! Basically,
pedorthists are highly trained professionals in the
design, fit and function of shoes and orthotics.
They are experts in external below-the-ankle care.
I would also like to add that they practice both
the “science and art” of making feet comfortable.
Proper shoes and orthotics should not only fit
your feet but also your lifestyle.
2. What kind of training is required to
become a pedorthist?
The Board for Certification in Pedorthics (BCP) is
the body that regulates who becomes a certified
pedorthist (CPed). For detailed information on the
steps involved in becoming certified, you should
visit the organization’s Web site at www.cpeds.org.
Briefly, to become a certified pedorthist, one
needs to complete a four-step process:
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1. Obtain some college credits in ancillary courses,
such as anatomy, physiology or biomechanics.
2. Complete a minimum of 120 hours of pedorthic
education in a program reviewed and approved
by the BCP. Many approved courses are given
throughout the country several times a year.
3. Gain some practical hands-on work experience
in pedorthics.
4. Study the appropriate materials and books
about pedorthics and shoe-fitting, and pass the
certification exam, which is held twice a year.
The BCP recognizes that this is a lot of work for
some applicants so it is now developing a tiered
program for potential certified pedorthists that
uses three levels to categorize their experience on
the way to becoming fully certified.
3. I have diabetes. Why should I wear
special shoes? Why can’t I just buy my
shoes from a local department store
like everyone else?
Diabetes is a serious disease that affects
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your emotions
conditions
will not collapse.
3. They can add rocker soles, wide flares
or wedges to many shoes to help
improve an amputee’s gait and stability.
6. Aren’t therapeutic shoes and
foot orthoses expensive? How
can I pay for them?
approximately 20.8 million Americans.
Unfortunately, a lot of complications are
also associated with diabetes, including
disruption of the vascular system, which
can impair many areas of the body,
such as the legs and feet. As a result,
people with diabetes should pay special
attention to their feet.
Of the 20.8 million Americans with
diabetes, about 25 percent will develop
foot problems related to the disease.
These foot problems often develop from
a combination of causes, including
poor circulation, which impairs the
healing process, and lack of sensation
to pain, heat or cold. With lack of feeling
in their feet, people with diabetes can
develop minor cuts, blisters or pressure
sores and not be aware that a wound is
developing. If these minor injuries are not
noticed and are left untreated, serious
complications like skin ulcerations may
arise and could eventually lead to the
need for amputation.
It is very important, therefore, for those
with diabetes to prevent all foot-related
injuries One of the best ways to do this
is to wear proper-fitting and correctly
constructed shoes. Wearing tightfitting or inappropriate shoes greatly
increases the chances that a serious foot
complication will develop. In addition, it
is recommended that those with diabetes
inspect their feet daily to watch for
potential problems.
4. Since I have diabetes, do
my shoes need to be specially
fitted by a pedorthist? I can tell
if my shoes fit, can’t I?
If you have diabetes, and especially if you
have any loss of sensation in your feet,
you should have your shoes fitted by a
pedorthist. A pedorthist will be able to
measure your feet correctly and choose
a shoe with the correct last, or model
shape, for your foot type. Good, protective
shoes will also have soft lining materials
and an absence of seams at critical
locations inside the shoe.
Two common misconceptions
regarding shoe fit are that you know your
shoe size and that you can feel when
a shoe is right for you. Let a pedorthist
measure your feet. Often your shoe size
may have changed, especially if you have
gotten older or heavier (like most of us).
Shoe fit also depends on the last model
used to make the actual shoe shape. The
pedorthist will know the best shape for
your foot. Unfortunately, many people
with diabetes have poor feeling in their
feet so they are inclined to buy shoes
that are too tight and too small. This can
lead to the very serious complications
discussed in the answer to Question 3. 5. Are pedorthists able to help
partial-foot amputees? If so,
how?
Pedorthists are able to help partial-foot
amputees in the following ways:
1. They can select the appropriate
footwear that properly fits and supports
the remainder of the foot.
2. They can often design a toe filler that
mimics the shape of the old foot. This
filler can be incorporated into the shoe
as part of a custom foot orthotic so that
the foot will appear normal from the
outside and so that the shoe’s toe box
Expensive is a relative term. People with
diabetes, who are at risk for ulcers and
amputations, must protect their feet at all
costs. Allowing an infection to begin can
lead to deadly consequences for their
overall long-term health. Not everyone
needs custom shoes and custom
orthotics, but everyone should have
proper-fitting and functioning footwear.
In the late 1980s, the government
recognized the increased incidence of
foot amputations in people with diabetes.
As a result, it developed the Medicare
Therapeutic Shoe Bill (TSB) to provide
protective footwear and orthotics for
people with diabetes who are at-risk for
amputations. Ask your local pedorthist or
podiatrist if you qualify for this program.
7. Is going to all of this extra
trouble to get the right type of
shoes that fit properly really
worth it?
Compromising the quality of your life for
cost is too high a price for anybody to
pay. For people with diabetes, an ounce
of prevention is certainly better than a
pound of cure! As pedorthists like to say,
“Good health starts from the ground up.”
About the Author
Seamus Kennedy,
CPed, is president
and co-owner of
Hersco Orthotic
Labs in New York
City. He received
his degree in
mechanical
engineering from University College
in Dublin, Ireland, in 1988 and became
involved in the biomechanics field in
1995.
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Ask the Podiatrist
W
by Neil M. Scheffler, DPM, FACFAS
1. What is a podiatrist? What kind of training is required to become one?
Podiatrists are physicians specially trained in
made of gold. That is how valuable that leg is to you.
foot and ankle care, including the diagnosis and
There are several things you can do to minimize
treatment of problems and diseases of the foot and
the risk of losing your other leg, but you should at
ankle. They may provide surgical and nonsurgical
least do the following:
care.
• Establish a relationship with a podiatrist,
Podiatrists attend college, followed by four years
preferably one who specializes in diabetic foot
of podiatric medical school. Most then go on to
problems.
• See your podiatrist regularly and follow his or
specialized residency programs. Podiatrists are
sometimes referred to as foot doctors, foot and
her instructions.
• Examine your foot daily, and report problems,
ankle surgeons, or podiatric surgeons.
Most states require completion of a 1- to 3-year
such as ingrown toenails, red spots, cuts, or
postdoctoral residency program and continuing
other wounds, to your podiatrist at once.
• Never walk without a shoe protecting your foot.
medical education (CME) for license renewal.
Certification by the American Board of Podiatric
If you have vascular disease, nerve damage or
Surgery requires:
deformities, such as a bunion or hammertoes, special
• Graduation from podiatric medical school
care may be needed. Your podiatrist will explain
• Completion of an approved podiatric surgical this care and should outline a plan to help you keep
residency
your remaining limb healthy. He or she may request
• Practice experience, including surgical case consultations with other health professionals, such
submissions
as neurologists or physiatrists for nerve disorders
• Written and oral examinations.
and vascular surgeons for problems with circulation.
2. When a person loses a leg because
of diabetes or peripheral vascular
disease, isn’t it likely that the other
foot is also already damaged and
might soon require amputation?
The remaining limb is certainly at risk. Both nerve
damage and poor circulation are generally bilateral,
meaning in both feet.
Studies have shown that from 9 to 20 percent of
people with diabetes who had already experienced
an amputation underwent a second amputation
within 12 months of the first surgery. Five years
after the first surgery, 28 to 51 percent of amputees
with diabetes had undergone a second amputation.
But you don’t have to be in this group. Common
sense and good preventive care can preserve what
you have. You must protect that remaining limb!
112
3. One of my legs has already been
amputated as a result of diabetes? I
don’t want to lose my other leg. What
should I do?
Begin by treating your remaining limb as if it were
4. I have peripheral vascular disease.
Do I need to do anything special to
protect my legs from amputation?
Yes. The decrease in blood flow to your feet and legs
puts you at an increased risk for amputation. Several
things might help you avoid this outcome, however.
It should go without saying that any tobacco use
is out of the question since tobacco decreases blood
circulation even further.
If your doctors say that it is OK, exercise, such
as walking, will help increase circulation or at least
maintain the current levels.
Your podiatrist may also ask you to schedule more
appointments with him or her than other patients
do. In addition, he or she will probably want to cut
your toenails rather than have you risk injury by
doing this yourself. Appropriate shoe choice is also
important, and your podiatrist can help you with this.
Since there are also medications and surgical
procedures that may help get more blood to your
feet, a consultation with a vascular surgeon may be
advisable.
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conditions
5. I have diabetes, and a small
sore has developed on my foot.
Do I really need to go to the
trouble of seeing a podiatrist?
Isn’t that overkill?
Stop reading this, and call your podiatrist
now! When you call to make an appointment,
be sure to say that it is urgent – that you
have a wound. Tell the office that you
also have other complicating factors
(diabetes, circulation problems, a previous
amputation). Even doctors with a full
schedule of appointments will understand
and squeeze you in or at least give you
advice over the phone until you can be seen.
A foot ulcer precedes 85 percent of
amputations. Appropriate and early
treatment of foot wounds increases the
likelihood of healing these wounds. Waiting
even a few days can be disastrous.
prominence, this piece of bone may be cut
out or moved to reduce this pressure. A
bunion (an enlargement of bone behind
the big toe) with an overlying ulcer would
be an example of such a projection.
If a wound is not healing because of
a lack of circulation, a vascular surgeon
may be consulted to operate on the
arteries to bring more blood to the area.
Surgical debridement (cutting away)
is often necessary to remove dead or
contaminated tissue from a wound. This
may convert the wound from a chronic,
stalled, nonhealing ulcer to a fresh wound
that can now go on to heal.
8. Since I lost a leg to diabetes,
my remaining leg is really
taking a beating. It has to
support the weight of my body
more than it did when I had
6. Are there any new circulation- both legs, and it seems that
the way I walk now causes
enhancement treatments or
more stress on it. Isn’t this
wound-care therapies that
dangerous? If so, what can I do?
are useful for preventing the
Increased stress upon your remaining
amputation of a second leg?
Improvements in medical care seem to
occur almost daily.
Advances in the diagnosis of peripheral
vascular disease include refined tests,
such as digital subtraction angiography,
which allows small vessels to be seen.
Once these vessels of the feet are viewable,
bypass surgery may be possible. Minimally
invasive procedures, such as arterial
stenting and peripheral plaque excision, are
also available to patients whose condition
is appropriate.
New wound-care therapies include
wound-healing gels, new wound dressings,
vacuum pumps to apply continuous suction
to the wound, and even artificially grown skin
to cover wounds and speed healing.
7. What surgical techniques
can help people with diabetes
once a nonhealing foot ulcer
appears?
Many surgical procedures can be
considered for nonhealing wounds.
If a wound is not healing because
of pressure from an underlying bony
limb certainly puts it at greater risk. You
need to discuss this issue with your
medical team. Your prosthetist may be
able to tweak your prosthesis to give
you a more normal gait. Your physiatrist
(rehabilitation specialist) and physical
therapist also may have suggestions.
Perhaps physical therapy would help
strengthen weak muscles. Your podiatrist
will advise you about shoe and sock
selection and specialized innersoles for
your shoes that can help protect your
remaining foot.
9. My father has diabetes and
wears open-toe shoes. He also
rarely checks his feet for sores.
How can I motivate him to
follow his doctor’s orders for
preventing more amputations?
This is a tough one; advice from family
members is often ignored. I used to say
that my children were not hard-of-hearing;
they were hard-of-listening.
Make sure you tell your father’s
podiatrist the problem and enlist his or
her help in emphasizing appropriate shoe
gear.
I would also suggest that you give your
father a gift – a membership in the American
Diabetes Association (ADA) and in the
Amputee Coalition of America (ACA) if he
isn’t already a member. Then, along with
the ACA’s bimonthly magazine inMotion, he
will receive the ADA’s monthly magazine
Diabetes Forecast. This publication is
always full of valuable information on
diabetes management and periodically
includes information on foot care and shoes.
Sometimes, the repetition of advice from
multiple sources is finally heeded.
For Additional Information
American College of Foot and Ankle
Surgeons
www.acfas.org
American Podiatric Medical Association
www.apma.org
American Diabetes Association
www.diabetes.org
About the Author
Neil M. Scheffler, DPM,
FACFAS, is a podiatrist
in private practice in
Baltimore, Maryland. He is
a fellow of the American
College of Foot and Ankle
Surgeons and is boardcertified in foot and ankle surgery. Dr.
Scheffler is a past president, Health Care &
Education, Mid-Atlantic Region, American
Diabetes Association. He is the attending
podiatrist for the Prosthetics Clinic, Sinai
Hospital of Baltimore.
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Dos and Don’ts for People With Diabetes
D
Do
• Wash feet daily
Using mild soap and lukewarm water, wash
your feet daily. Dry carefully with a soft towel,
especially between the toes, and dust your feet
with talcum powder. If the skin is dry, use a good
moisturizing cream daily, but avoid getting it
between the toes.
• Inspect
feet and toes
daily
trigger an ingrown toenail. Use an emery board
to gently file away sharp corners or snags.
• Exercise
As a means to keep weight down and improve
circulation, walking is one of the best all-around
exercises for the diabetic patient. Walking is
also an excellent conditioner for your feet. Be
sure to wear the appropriate athletic shoe when
exercising. Ask your podiatric physician what’s
best for you.
Check your feet
every day for
cuts, bruises,
sores or other
changes that may be less obvious. If age or other
factors hamper self-inspection, ask someone to
help you or use a mirror.
• Lose weight
People with
diabetes are
commonly
overweight,
which nearly
doubles the risk of
complications.
• Wear thick, soft socks
Socks made of an acrylic blend are well-suited
– but avoid mended socks or those with seams,
which could rub to cause blisters or other skin
injuries. Turn socks inside out with the seams on
the outside.
• Give up smoking
Tobacco can contribute to circulatory problems,
which can be especially troublesome in patients
with diabetes.
• Cut toenails straight across
Never cut into the corners or taper. This could
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• See your podiatric physician
Regular checkups by your podiatric physician
– at least annually – are the best way to ensure
that your feet remain healthy.
• Be properly measured and fitted
every time you buy new shoes
Shoes are of supreme importance to people with
diabetes because poorly fitted shoes are involved
in approximately 50 percent of the problems
that lead to amputations. Because foot size
and shape may change over time, people with
diabetes should have their feet measured by an
experienced shoe fitter whenever they buy a new
pair of shoes.
New shoes should be comfortable at the time
of purchase and should not require a “break-in”
period; however, it’s a good idea to wear them for
short periods at first. Shoes should have leather
or canvas uppers, fit both the length and width of
the foot, leave room for toes to wiggle freely, and
be cushioned and sturdy.
D
Don’t
• Don’t go barefoot
Not even
in your
own home.
Barefoot
walking
outside is
particularly
dangerous
because of
the possibility
of cuts, falls,
and other
foot injuries
on unfamiliar
terrain. When at home, wear slippers. Never go
barefoot.
• Don’t wear high heels, sandals or
shoes with pointed toes
These types of footwear can put undue pressure
on parts of the foot and contribute to bone and
joint disorders or diabetic ulcers. In addition,
open-toed shoes and sandals with straps
between the first two toes should be avoided.
• Don’t drink
in excess
Alcohol can
contribute to
neuropathy
(nerve damage),
which is
one of the
consequences
of diabetes.
Drinking can
speed up
the damage
associated with
the disease, deaden more nerves, and increase
the possibility of overlooking a seemingly minor
cut or injury.
• Don’t wear anything that is too
tight around the legs
Panty hose, panty girdles, thigh-highs or kneehighs can constrict circulation to your legs and
feet. So can men’s dress socks if the elastic is too
tight.
• Don’t try to remove calluses, corns or
warts by yourself
Commercial, over-the-counter preparations
that remove warts or corns should be avoided
because they can burn the skin and cause severe
damage to the foot of a person with diabetes.
Never try to cut calluses with a razor blade or
any other instrument because the risk of cutting
yourself is too high, and such wounds can often
lead to ulcers and lacerations. See your podiatric
physician for assistance in these cases.
Source
www.apma.org
For more information, call 1-800/FOOTCARE
115
“Knock Your Socks Off” and Save Your Feet!
D
Diabetes is the leading cause of nontraumatic foot amputations each year.
One way you can protect your feet is by catching any problems with them
early. That’s why the American Podiatric Medical Association (APMA), the
nation’s leading professional society for foot and ankle specialists, is urging
individuals to “knock their socks off” during every visit to their doctor.
If patients would simply take off their socks and
ask their doctor to check their feet at every visit, it
could reduce diabetic foot amputations by 45 to 85
percent.
Why Is It So Important?
Of the 20.8 million people with diabetes in the U.S.,
perhaps 60 to 70 percent have diabetic nerve
damage, which often includes impaired feeling in
the feet and hands. With this impaired sensation,
these people often don’t feel it when their feet are
hurt. As a result, the damage worsens, and they
don’t even realize it until it’s too late and amputation
is the only solution.
Another problem is that millions of people in
the U.S. have diabetes and don’t even know it,
according to the American Diabetes Association.
Since the feet often show the first signs of severe
medical conditions, having them checked at every
visit to the doctor could help the doctor determine
if a person might have diabetes. Because primary
healthcare physicians don’t routinely check
patients’ feet, the APMA’s “Knock Your Socks Off”
campaign encourages patients to ask their primary
healthcare physician to examine their feet as part of
their regular checkup.
“Early detection is paramount,” says Dr. Lloyd
Smith, former president of the APMA.
A Simple Solution
116
While there are numerous other ways to help
protect your feet against amputation, some of them
require lifestyle changes, such as changing your
diet and exercising regularly. Though these changes
are essential for protecting the body against the
ravages of diabetes, including amputation, many
people just don’t stick with them.
That’s the beauty of the “Knock Your Socks Off”
campaign. Though it doesn’t replace the necessity
to take care of your health and your feet on a daily
basis, it provides an easy opportunity for you to
catch any foot problems early enough to prevent
the need for amputation. All you have to do is ask
your doctor to look at your feet during every office
visit.
It’s that simple.
For free foot health information, contact the APMA
at 1-800/366-8227 or visit www.apma.org
Keeping the Sound Limb Sound
Foot Issues for Amputees With Diabetes
Illustrations by Frank Angulo
W
Illustrations used with the permission of Advanced Rehabilitation Therapy, Inc., Miami, Florida
When planning a rehabilitation program for the lower-limb amputee with
diabetes, management of the sound limb plays an important role.
Figure 1. Poor walking
biomechanics increase the
forces on the sound foot,
creating greater risk for skin
breakdown and ulcers.
Preservation of the sound limb, in many cases,
allows people to continue walking and delays
further medical complications that can reduce
their quality of life. One main reason for this
concern is that the sound limb routinely
compensates for the amputee’s inability to
maintain equal weight distribution between limbs,
resulting in altered walking mechanics. Two
effects on the nonamputated limb raise concern:
The first is the additional forces being placed on
the weight-bearing surfaces of the foot, which
introduce the soft tissues, such as the skin, to the
risk of ulcers, and the second is the change in
ground reaction forces throughout the skeletal
structures of the limb, which place undue stress
on the joints of the foot, knee and hip.
Increased forces placed on the intact limb
during ambulation can be of considerable
concern since the foot often has neuropathic
symptoms, such as loss of sensation, foot
deformity and muscle weakness, which make the
soft tissues vulnerable to injury or ulcers. The
general walking pattern of patients with diabetic
neuropathy is tentative, stemming from feeling
unsafe when they stand or walk. This conservative
walking style is characteristically the product of
poor proprioception (sense of where the foot is
in space), diminished sensory information, poor
balance, and an overall lack of stability. It could,
however, lead to slower walking, inconsistent
step length and adverse forces or pressure being
applied to the foot (Figure 1.) Even nonamputees
with peripheral diabetic neuropathy demonstrate
alterations in foot biomechanics that could
increase peak foot pressures and facilitate foot
injuries or ulceration. In some cases, a shuffling
gait is adopted that, while reducing peak foot
pressures by distributing applied forces over a
greater area, also causes increased fatigue and
stress to the soft tissues of the foot, which could
lead to foot ulcers.
Able-bodied people with peripheral diabetic
neuropathy have a high risk for developing
ulcers on the sole of the foot, and it is believed
that most of these ulcers develop during walking.
Fifty percent of amputees with diabetes will
also develop sound-foot infections and possible
amputation within two years of the amputation
of the first foot; therefore, clinicians working with
amputees who have diabetes must be alerted to
the potential of complications that may arise in the
residual foot. The term “sound” limb can be very
misleading. In fact, it is probably just a twist of
fate that one foot became infected before the other
and, thus, only a matter of time before problems
begin to arise with the sound limb if the patient
does not take extreme care. The odds are certainly
working against the amputee, especially if any
other foot deformity, such as toe clawing or flat
feet, is present as the amputee learns to use his or
her prosthesis.
Because amputees with diabetic neuropathy
will often avoid full weight-bearing through their
prosthesis, the sound limb must accept a greater
proportion of body weight. Typically, because
the amputee unconsciously tries to get off of the
prosthetic limb as quickly as possible, the sound
limb swings much faster than normal, striking
the ground with greater force and causing
increased insult to the heel of the foot. Then, as
the prosthetic foot strikes the ground, the body
weight often moves rapidly forward over the
sound foot to the metatarsal heads (foot bones)
and toes (Figure 2). Most amputees hold this
117
Figure 2.
A) Lack of prosthetic stability increases ground reaction forces as the sound anatomical
heel strikes the ground.
B) Forces decrease as the body’s weight moves rapidly over the sound foot.
C) Increased time of double support as the amputee slowly moves his or her weight onto
the prosthesis increases the forces on the toes of the sound foot.
position a little longer than normal as
they prepare to put their full weight onto
the prosthesis, and this prolonged time
on the forefoot can frequently cause
calluses at the base of the first three
toes. Calluses must be taken seriously
because they can create and hide tissue
damage, which can lead to foot ulcers.
In cases where the great toe has been
amputated, stricter precautions must be
adhered to since the second and third
toes must now accept the body’s weight.
Because these toes were not designed
to accept these increased forces, there is
an increased risk of callus formation and
tissue damage. It is extremely important,
therefore, that daily inspections of the foot
are made and any changes to the skin
are reported to the physician.
The combination of additional vertical
forces and shear stresses placed on the
sound foot and the increased possibility
of disproportionate weight bearing
can result in increased skin lesions,
ulcers and/or joint degeneration. This is
apparent by the unsettling fact that 50
percent of amputees will have another
amputation involving the same or the
sound limb within four years after the
primary amputation. Without hesitation,
new amputees should be made aware
of the impending dangers from the
onset of rehabilitation. Accordingly, foot
care becomes even more critical after
amputation for people with diabetes,
especially since a high percentage
will lose their sound limb within a few
years and their chances of achieving
functional ambulation as a bilateral
amputee will decline. Therefore, the
goal of rehabilitation must include
regular clinical follow-up, appropriate
shoe wear, education, and instructional
measures designed to reduce the risk of
skin lesions, ulceration, and additional
degeneration of the sound limb.
About the Author
(See page 16.)
The Importance of Heel Height for Lower-Limb Amputees
If you wear a prosthetic foot that does not have an adjustable
heel, the heel will be set at a specific height. It is, therefore,
very important that you always choose shoes that match that
height to keep your prosthesis in the correct alignment.
If the shoe heel is too low, it can cause:
• Difficulty rolling over the toe when walking
• Hyperextension of the anatomical knee in below-knee
amputees
• Stress to the prosthetic knee in above-knee amputees.
If the shoe heel is too high, it can cause:
• Pressure on the end of the tibia in below-knee amputees
• Buckling of the prosthetic knee joint in above-knee
amputees.
It is not just the height of the heel you have to consider
when you choose shoes, however; it is the difference between
the thickness of the sole and the thickness, or height, of the
heel. For instance, a shoe with a 1-inch sole and 2-inch heel
118
has a difference of 1 inch. A shoe with a 3-inch sole and a
4-inch heel also has a difference of 1 inch even though the
second shoe looks much higher. Both of these shoes will
work with a foot that is made for 1-inch heels. Use the front
of the heel (under the instep), not the back, to measure the
height.
1” Sole
2” Heel
1” Difference
3”
1” Difference
1”
2” Sole
3” Heel
1” Difference
4”
2”
1” Difference
Mix With Care
Beware of Interactions Between Prescription Medicines
and Foods, Herbal Supplements and Other Drugs
P
by Bill Dupes and Scott McNutt
People with limb loss often have other medical conditions for which they
must take prescription drugs. Seniors make up a significant percentage of
this population, and it is estimated that Americans over 65 take an average
of seven medications at any one time to treat a variety of illnesses. That’s a
lot of prescriptions to keep track of.
In addition, a rapidly growing number of
Americans are self-medicating through a variety of
herbal supplements. The percentage of Americans
using herbal products grew from 2.5 percent
in 1990 to 12.5 percent in 1997. Unfortunately,
nearly 60 percent of these people don’t tell their
physicians about their use of herbal supplements.
Why Does Your Doctor Need to Know?
Most drugs are designed to work on a specific
organ or system; however, because they travel
through the circulatory system, they can also affect
other parts of the body. A drug taken for a lung
disease may affect the heart, and a drug taken to
treat a cold may affect the eyes. Because drugs
can also affect diseases other than the one being
treated, make sure that your doctor is aware of
all of the conditions you have before he or she
prescribes something new, particularly if you have
diabetes, glaucoma, or high or low blood pressure.
Tell your doctor:
• About any special diet you follow (the “lowcarb” diet, for example)
• How much, if any, alcohol, caffeine or cigarettes
you consume (and be honest)
• Immediately if you experience any unexpected
symptoms after taking a medication.
Why Does Your Pharmacist Need
to Know?
Over-the-counter (OTC) drugs and herbal
products can interfere with your prescription
drugs by neutralizing them, amplifying them, or
altering the intended effects in other ways. For
example, a common antacid can render certain
antibiotics useless. Decongestant cold medicine
may increase your blood pressure and speed up
your heart rate, which can be a problem if you’re
also taking medicine for high blood pressure.
Prescription drugs can also interact adversely
with a surprisingly wide variety of common foods.
The potential for dangerous mixtures should
not be underestimated, given the almost infinite
variety of possible combinations. For example, if
you’re taking medication for high blood pressure
and you enjoy onions or garlic, bad breath could
119
become the least of your problems. Does
this mean resigning yourself to eating
spaghetti without sauce from now on?
No. But it does highlight the importance
of open communication with your doctor
and pharmacist about what you eat and
drink, any known allergies, and all of the
prescription and OTC medications you
use, including herbal supplements and
vitamins.
For this reason, it’s best to use just one
pharmacy for all your prescriptions, if at
all possible; this will make it easier for the
pharmacist to be aware of possible drug
interactions since all your medications
are on file in one place. But don’t just
settle for one that’s close to home. Select
the one that best suits your needs. Look
for a drugstore where pharmacists will
take the time to answer your questions
thoroughly. Some drugstores also offer
other conveniences such as 24-hour
service, senior citizen discounts, and
delivery service.
Sample Food, Supplement and Medication Interactions*
Drug Type/Common Brands
Purpose/Action
Possible Adverse Interactions
ACE (Angiotensin Converting Enzyme)
Inhibitors – Capoten, Prinivil, Univasc,
Vasotec, Zestril
Relax blood vessels, lower blood pressure
Food – Salt substitutes, bananas, green leafy
vegetables, and oranges – can increase
potassium levels.
Anti-inflammatory (Aleve, Motrin, Ibuprofen)
– reduced effectiveness
Anticoagulants – Warfarin (Coumadin)
Prevent excess blood clotting
Sleeping pills, ginger, gingko, food high in
vitamin K (broccoli, spinach, cauliflower)
– reduced effectiveness
Antihistamines – Allegra, Benadryl,
Chlor-Trimeton, Claritin
Cold and allergy relief
Prescription pain relievers – increased
sedative effects
Aspirin – Bayer, Empirin
Fever and mild pain relief
Anticoagulants – increased risk of
excessive bleeding
Beta Blockers – Inderal, Lopressor
Lower blood pressure
Antidiabetic medication – decreased effect
of AD meds, increased frequency/severity
of low blood sugar episodes
Decongestants – Dristan, Vicks
Cold and allergy relief
Diuretics – aggravate high blood pressure
Diuretics – Dyazide, Hydrodiuril, Maxzide
Eliminate water, sodium, and chloride from
the body
Various foods and nutrients – potassium
loss or excess. Excess potassium may
cause irregular heartbeat.
Glucose-Lowering Drugs – Avandamet,
Avandia, Diabeta (sulfonylureas), Glucotrol,
Glynase, Metformin (Glucophage), Micronase,
Prandin, Rezulin (thiazolidinediones), Starlix
(meglitinides)
Lower glucose
Calcium, gingko biloba, ginseng, guar gum,
magnesium - increased, decreased or
altered effectiveness
Insulin – Humulin, NovoRapid, Oralin
Control diabetes
Chromium, Gymnema sylvestre - increased,
decreased or altered effectiveness
Iron Supplements – Solaray, Twinlab
Correct iron deficiency (anemia)
Antibiotics – reduced effectiveness
Pain Relievers – Oxycodone and
acetaminophen – (Percocet, Roxicet, Tylox)
Relieve pain
Jamaica dogwood, kava kava, lavender, milk
thistle, vitamins B9 and C - increased effects
NSAIDs (Nonsteroidal Anti-Inflammatory
Drugs), medications for cough, cold, allergy,
weight loss - increased, decreased or
altered effectiveness of either drug.
Antihistamines and other medicines
for allergies, hay fever, or colds, muscle
relaxants, sleeping pills - increased effects
120
Salt Substitutes – Morton Lite, Mrs. Dash
Control water retention
Diuretics – increased potassium levels,
irregular heartbeat.
Statins - Atorvastin, Simvastatin (Lipitor, Zocor)
Lower cholesterol and triglyceride levels
Fibrates (other fat-lowering drugs) - greatly
increased risk of muscle tissue breakdown
*Alcoholic drinks, antacids, grapefruit juice, St. John’s wort and ephedra (now banned) are omitted from this sample table because they
interfere so often with prescription medications that it’s best to completely avoid them while taking any sort of drugs. And, of course, avoid
using any tobacco products.
What Do You Need to Know?
• Read the prescription instructions
carefully and follow them exactly. Even
something as simple as "shake first" or
"refrigerate" should be taken seriously.
If you’re confused, try repeating the
instructions in your own words to the
pharmacist.
• Read the instructions on the OTC and
herbal medications you take.
• Never take another person’s
prescription. Period. Everyone
responds to drugs differently.
• Check online for information about
prescription drugs and possible
interactions (see the suggested Web
resources at the end of this article).
The table on page 120 shows the
possible adverse interactions of various
foods, herbal supplements and OTC
drugs with medications often prescribed
for seniors and people with amputations,
diabetes or heart disease. The possible
interactions listed in the table are by no
means complete. That would take an
entire book or database. In addition, this
table is not meant to scare you. It is only
meant to make you aware of the need
to be careful. Again, the best course of
action with any prescription medication
is to consult your doctor and pharmacist
about potential interactions with other
substances.
PDRhealth
www.pdrhealth.com/drug_info/index.
html
U.S. Food and Drug Administration
Drugs@FDA
www.accessdata.fda.gov/scripts/cder/
drugsatfda/index.cfm
Note: This article is intended for
educational purposes only. For specific
advice about appropriate drugs for your
condition and potential side-effects and
interactions, you should consult a doctor
and/or pharmacist.
Related Resources
Drugs.com
www.drugs.com
MedicineNet.com
www.medicinenet.com/medications/
article.htm
Professionals! First Step is the perfect
resource for your new patients!
Call and ask about our bulk discounts!
Order copies of ACA’s educational
resource guide, First Step – A Guide for
Adapting to Limb Loss, to share with your
family, friends, and support group!
Call, e-mail or visit the ACA’sWeb site
to learn how you can purchase this
publication by the copy or®by the box!
®
888/AMP-KNOW (267-5669)
sales@amputee-coalition.org
www.amputee-coalition.org/marketplace
121
Where Do You Go From Here?
Y
“You gain strength, courage, and confidence by every experience in which
you really stop to look fear in the face. You are able to say to yourself, ‘I have
lived through this horror. I can take the next thing that comes along.’ . . . You
must do the thing you think you cannot do.”
122
– Eleanor Roosevelt
between parallel bars, determined to walk again,
The thing you think you cannot do is frequently
even as they struggled with additional health
the thing that gives you the most pleasure when
problems. Most of all, I have been proud of the
you succeed. So, where do you go from here? You
spirit of the human race.
take things one step at a time, both figuratively
There are so many stories of triumph that I
and literally, until you can walk a mile, run a race,
play ball with your child, pick up your grandchild, could fill books with them. Still, a few immediately
come to the forefront of my mind.
and, in short, live again.
First, there’s the young boy who had to have
I did my first peer visit more than 48 years ago.
all four of his limbs amputated due to a virulent
I was still doing my nursing training in London
infection process and who was quoted as saying, “I
and was asked to visit a young girl who needed
look at it this way; no matter if a person is missing
an amputation. I can still picture her now and
one limb or all four limbs, that person is not
remember the long talks we had. The fact that
disabled. Some people, like me, just have to find a
I was in nursing and she could see me literally
different way of doing things.”
running around the ward showed her what was
Then there is the lieutenant colonel in the Air
possible. During the more than 20 years I have
Force
who, despite having a leg amputated above
been working in this field, I have come in contact
the knee, was determined to return to flying. After
with more courageous people than I can possibly
more than 500 hours of intense rehabilitation,
count who were determined to put their lives
he was finally ready to be tested. At the end of
back together and were succeeding at it.
his flight, he landed the C-20, taxied in, stopped,
I have watched babies learn to stand on
tiny prostheses and manipulate
minuscule myoelectric hands. I
have seen teen-agers overcome
their dread of being seen without
their prostheses because they
were with a whole group of other
amputee youths who were all
taking their prostheses off and
stacking them against the wall as
they prepared to hit the ski slopes.
I have seen young adults returning
to jobs, finding partners, marrying
and starting families. I have been
awed by the strength of elderly
Lt. Col. Andrew Lourake US Air Force photo by Bobby Jones
patients stomping up and down
opened the side window, and hung
up a disabled parking permit! In 2004,
he was reinstated to active duty and
has returned to his job as a Special
Air Missions pilot for the 99th Airlift
Squadron at Andrews Air Force Base,
where he flies the vice president, the first
lady, and other dignitaries. But more than
that, he is an ACA-certified peer visitor
and peer visitor trainer, and he and
his wife regularly visit injured military
personnel at Walter Reed Army Medical
Center to help them through the recovery
process.
Then there are the many retirees who
lead amputee support groups around the
country because they want to “give back”
for the support they received when they
were new amputees. They work tirelessly
as volunteers to help others on the road
to recovery. Many of them say, as do I,
that they get as much out of doing the
visits as the recipients, maybe more.
At first, you think that it will never
happen – that you will never be happy
and independent again. But if you’ll
look around, you’ll realize that there are
mailmen and women, firefighters, nurses,
judges, lawyers, doctors, housewives,
teachers, congressmen, schoolchildren,
farmers, athletes, generals – you name
it – who are all working and conducting
their lives with the absence of a limb.
Certainly, at first, you are dependent
on medication for pain, on medical
personnel and family members to care
for you, and on a prosthesis or other
assistive device to help you function. But
as time goes by, you will start becoming
more independent until one day you will
suddenly realize that you are back to the
activities you were doing before. In fact,
some people may even do more than
they did before their limb loss.
There are several important things
we all need to do for ourselves now that
we are living with an upper- or lowerlimb amputation. First, we all need to
maintain our strength and flexibility by
exercising regularly. I know that no one
wants to exercise, but it will truly help in
many ways. It will make walking easier,
keep your body in alignment, prevent
contractures, and make you feel good
about yourself. Of course, we cannot all
exercise at the same level so do what
is appropriate for you and ask your
healthcare provider for some guidelines.
We also need to maintain our weight,
and if we have diabetes, we need to
watch our diet, inspect our residual limb
and other foot for skin breakdown, keep
our sugar levels in the correct range,
and go for regular checkups. In addition,
those of us on medications need to be
sure to take them at the right times.
If we use a prosthesis, we need to make
“It’s not a sin to get knocked down;
it’s a sin to stay down.”
– Carl Brashear, whose life as an amputee was chronicled in the
movie Men of Honor
“I am a firm believer that hard work,
determination and faith in yourself will
allow you to accomplish whatever you
desire.”
– Former Senator Max Cleland, who lost both legs and a right arm in Vietnam
regular appointments with our prosthetist
to maintain its fit. It’s also advisable to
have a yearly evaluation by a physical or
occupational therapist to make sure that
we haven’t fallen into “bad” habits.
Finally, we need to review our insurance
policy regularly to make sure that no
changes have been made to reduce or
eliminate reimbursement for prostheses
or other assistive devices. If this happens,
be sure to contact the ACA.
Apart from that, in the immortal words
of that great Star Trek philosopher Spock,
“Live long and prosper.” And remember,
the ACA is here for you.
business, and they’re buying all of my
tools and helping me with marketing and
public relations. Now I just want to get
back to construction work and give back
to my family what they gave me – hope.”
– Chris Earles, who lost an arm in an
accident, survived thoughts of suicide, and then decided to put his life back together.
“I thought that reading the stories of other
amputees might help me, and it did.
It showed me that I’m not the only
one who ever lost a limb. … [Now
Vocational Rehabilitation] is trying
to help me restart my concrete
(Left to right):
Bailee Iorg,
Don Leggett
and
Rebecca
Bruce
123
resources
American Board for Certification in Orthotics & Prosthetics • College Park Industries • First Tennessee
Bank • FLO-TECH • Great Plains Orthotics & Prosthetics, Inc. • Malone Prosthetics & Orthotics • Muilenburg
Prosthetics & Orthotics, Inc. • Nebraska Orthotic & Prosthetic Services • Perry Prosthetics, Inc.
Preferred Orthotic and Prosthetic Services • Ryder Orthopaedics, Inc.—Naples, FL • Sequoia Prosthetics
resources
Resources
Advocacy
Publications
“Advocating for Your Child.” Rick Bowers.
Expectations. 2005, pp. 30-31.
www.amputee-coalition.org/expectations/
advocating.html
American Bar Association
800/285-2221
www.abanet.org/disability
“Taking Charge: How to Become Your Child’s
Best Advocate.” Jenifer Simpson and Helen
Rader. inMotion. May/June 2001, pp. 16-18.
www.amputee-coalition.org/inmotion/may_
jun_01/childs.html
American Association of People with
Disabilities
800/840-8844
www.aapd-dc.org
Americans with Disabilities Act Hotline
800/514-0301
Amputee Coalition of America
888/267-5669
Note: No funding from the CDC
is used to support ACA advocacy efforts.
Fair Housing Act
202/708-1112
www.hud.gov/offices/fheo/FHLaws
Independent Living Centers Directory
www.virtualcil.net/cils
National Patient Advocate Foundation
757/873-0438
www.npaf.org
Patient Advocate Foundation
800/532-5274
www.patientadvocate.org
SNAP: Special Needs Advocate for Parents
888/310-9889
www.snapinfo.org/home.html
Voices for America’s Children
202/289-0777
www.childadvocacy.org
Wrightslaw
www.wrightslaw.com
Amputation Levels
“Know Your Options: An Explanation of
the Rotationplasty and Tibia Turn-Up
Procedures.” Kevin Carroll. inMotion. March/
April 2005.
www.amputee-coalition.org/inmotion/mar_
apr_05/rotationplasty.html
“Notes From the Medical Director (NFMD):
Higher Challenges: The Hip Disarticulation
and Transpelvic Amputation Levels.” Parts
1-3. Douglas G. Smith. inMotion. January/
February 2005, March/April 2005, May/June
2005.
www.amputee-coalition.org/inmotion/jan_
feb_05/higherchallenges.html
apr_05/higherchallenges2.html
jun_05/higherchallenges.html
“NFMD: The Knee Disarticulation: It’s Better
When It’s Better and It’s Not When It’s Not.”
Douglas G. Smith. inMotion. January/February
2004.
www.amputee-coalition.org/inmotion/jan_
feb_04/kneedisartic.html
“NFMD: The Syme Ankle-Level
Disarticulation: Heels and Healing.” Douglas
G. Smith. inMotion. May/June 2003.
jun_03/meddir.html
“NFMD: The Transfemoral Amputation
Level. Parts 1–5: “ Douglas G. Smith. inMotion.
March/April 2004, May/June 2004, July/August
2004, September/October 2004, November/
December 2004.
apr_04/transfemoral.html
jun_04/transfemoral.html
www.amputee-coalition.org/inmotion/jul_
aug_04/transfemoral3.html
www.amputee-coalition.org/inmotion/sep_
oct_04/transfemoral4.html
www.amputee-coalition.org/inmotion/nov_
dec_04/transfemoral5.html
“NFMD: Transtibial Amputations: Successes
and Challenges.” Douglas G. Smith. inMotion.
July/August 2003.
aug_03/meddir.html
“Prosthetic Primer: Partial Foot Amputation:
Sometimes Less Means More.” Douglas G.
Smith. inMotion. March/April 2003.
apr_03/primer.html
“Support and Information for Upper-Limb
Amputees: Just a Few Keystrokes or a Phone
Call Away!” Eric Westover. inMotion. May/June
2005, pp. 56-57.
jun_05/upper-limbsupport.html
Assistive Devices
ABLEDATA
800/227-0216
www.abledata.com
Adaptive Driving Alliance
623/434-0722
www.adamobility.com
Association for Driver Rehabilitation
Specialists
800/290-2344
www.driver-ed.org
Automotive Safety Issues
888/327-4236
www.nhtsa.dot.gov/cars/rules/adaptive
The Center for Universal Design
800/647.6777
www.design.ncsu.edu/cud
Disabled Dealer Magazine
888/521-8778
www.disableddealer.com
eBay – Disability Resources
pages.ebay.com/disability-resources
125
Family Center on Technology and Disability
202/884-8068
www.fctd.info
National Mobility Equipment Dealers
Association
800/833-0427
www.nmeda.org
National Resource Center on Supportive
Housing and Home Modification
213/740-1364
For resources on assistive technology for
employment, see page 84.
Caregiving
Children of Aging Parents
800/227-7294
www.caps4caregivers.org
ElderWeb
309/451-3319
www.elderweb.com
FamilyCareAmerica
www.familycareamerica.com
Family Caregiver Alliance
800/445-8106
www.caregiver.org
National Alliance for Caregiving
www.caregiving.org
National Association for Home Care
202/547-7424
www.nahc.org/Consumer/coninfo.html
National Family Caregivers Association
800/896-3650
www.nfcacares.org
Publications
Caregiving Newsletter
773/343-6341
www.caregiving.com
Today’s Caregiver
800/829-2734
www.caregiver.com
Community & Federal Services
& Funding Assistance
American Association of People
with Disabilities
800/840-8844
www.aapd.com/links/linkscholarshipawards.
php
Barr/United Amputee Assistance Fund
561/394-6514
www.oandp.com/organiza/barr/index2.htm
BenefitsCheckUp
www.benefitscheckup.org
126
Benefits for Children With Disabilities
800/772-1213
www.ssa.gov/pubs/10026.html
Disabled Children’s Relief Fund
www.dcrf.com
Easter Seal Society
800/221-6827
www.easter-seals.org
GovBenefits.gov
800/333-4636
www.govbenefits.gov
Habitat for Humanity
www.habitat.org/local
Limbs for Life Foundation
888/235-5462
www.limbsforlife.org
U.S. Dept. of Veterans Affairs
800/827-1000
www.va.gov
Variety Clubs International
888/852-1300
www.usvariety.org
Vocational Rehabilitation
800/772-1213
www.ssa.gov/work/ServiceProviders/
rehabproviders.html
Diabetes
American Association of Diabetes Educators
800/338-3633
www.diabeteseducator.org
Lions Clubs International
630/571-5466
www.lionsclubs.org
American Diabetes Association
800/342-2383
www.diabetes.org
Medicaid
Early & Periodic Screening, Diagnosis &
Treatment
410/786-5916
www.cms.hhs.gov/medicaid/epsdt
State Plans
877/267-2323
www.cms.hhs.gov/medicaid/stateplans
800/275-2762
www.apma.org
Medicare
800/633-4227
Helpful Contacts
www.medicare.gov/Contacts
Prescription Assistance Programs
www.medicare.gov/Prescription/Home.asp
CDC Diabetes Public Health Resource
877/232-3422
www.cdc.gov/diabetes
Diabetes Action
202/333-4520
www.diabetesaction.org
Diabetes Exercise and Sports Association
800/898-4322
www.diabetes-exercise.org
The Medicine Program
866/694-3893
www.themedicineprogram.com
Joslin Diabetes Center
617/732-2400
www.joslin.org
National Patient Air Transport Helpline
800/296-1217
www.npath.org
Juvenile Diabetes Research Foundation
800/533-2873
www.jdrf.org
New Beginnings Prosthetic Ministries
949/230-1999
www.newbeginnings2000.org
National Diabetes Education Program
More Than 50 Ways to Prevent Diabetes
301/496-3583
www.ndep.nih.gov/diabetes/pubs/50Ways_
tips.pdf
Partnership for Prescription Assistance
888/477-2669
https://www.pparx.org
Prosthetics for Diabetics Foundation
www.expage.com/page/pfdfoundation
Rotary International
847/866-3000
www.rotary.org/services/clubs
St. Jude Children’s Research Hospital
866/2STJUDE
www2.stjude.org
Shriners
800/237-5055
www.shrinershq.org/hospit.html
National Diabetes Information
Clearinghouse
800/860–8747
www.diabetes.niddk.nih.gov
resources
National Institutes of Health
301/496-4000
www.nih.gov
USDA National Nutrient Database
301/504-0630
www.nal.usda.gov/fnic/foodcomp/search
National Rehabilitation Information Center
800/346-2742
www.naric.com
Pain
National Women’s Health Information Center
800/994-9662
www.4woman.gov
Surviving Limb Loss
www.survivinglimbloss.org
National Library of Medicine
888/346-3656
www.nlm.nih.gov
Insurance Issues
Georgetown University Health Policy
Institute
www.healthinsuranceinfo.net
National Institute of Diabetes & Digestive
& Kidney Diseases
www.niddk.nih.gov
publications
Diabetes Forecast
800/806-7801
www.diabetes.org/diabetes-forecast.jsp
Diabetes Health Magazine
800/488-8468
www.diabetesworld.com
Diabetes Self-Management
800/234-0923
www.diabetesselfmanagement.com
Education
See page 80.
Employment
See page 80.
Exercise
See page 94.
Health Information
American Amputee Foundation
501/666-2523
www.americanamputee.org
Amputee Resource Foundation of America
www.amputeeresource.org
DisabilityInfo.gov
www.DisabilityInfo.gov
HealthFinder.gov
www.healthfinder.gov
iSafetyNet
202/842-9005
www.isafetynet.org
American Pain Society
847/375-4715
www.ampainsoc.org
The National Foundation for the Treatment
of Pain
713/862-9332
www.paincare.org
Virtual Hospital
www.vh.org
Photo courtesy of Freedom Innovations
American Pain Foundation
888/615-7246
www.painfoundation.org
For more information about pain,
see First Step,Volume 2 and Volume 3.
HealthCove
800/796-5558
healthcove.com
Peer Support
Friends Health Connection
800/483-7436
www.48friend.org
Insure Kids Now!
877/543-7669
www.insurekidsnow.gov
See page 25.
Publication
“Peer Contact for Parents of Children With
Congenital Amputations.” Karen Neimanas.
Fact Sheet. 2002.
www.amputeecoalition.org/fact_sheets/
pc_congenital_amputations.html
Multicultural Health
Peripheral Vascular Disease
For more insurance resources, see page 74.
Mental Health
See Connections at
www.amputee-coalition.org/connections.
html
Nutrition
American Dietetic Association
800/877-1600
www.eatright.org
Nutrition.gov
www.nutrition.gov/home/index.php3
American Heart Association
800/242-8721
www.americanheart.org
Legs For Life
www.legsforlife.org/main.shtml
Vascular Disease Foundation
866/723-4636
www.vdf.org
Prostheses
American Board for Certification
in Orthotics and Prosthetics
703/836-7114
www.abcop.org
Board for Orthotist/Prosthetist Certification
877/776-2200
www.bocusa.org
Publications
“Pediatric Prosthetic Care Requires Special
Considerations.” Chris Perry. inMotion. May/
June 2001.
jun_01/primer.html
For more information about prosthetic devices,
see First Step,Volume 2 and Volume 3.
127
U.S.Administration on Aging (AoA)
202/619-0724
www.aoa.gov
Publications
“Prosthetic Rehabilitation and Technology:
Options and Advances for Seniors.” Douglas
G. Smith. inMotion. November/December 2005.
“When Are Prostheses the Right Choice for
Older Amputees – And When Are They Not?”
Terrence P. Sheehan. inMotion. November/
December 2005.
Weight Management
Aim for a Healthy Weight
301/592-8573
www.nhlbi.nih.gov/health/public/heart/
obesity/lose_wt
American Obesity Association
202/776-7711
www.obesity.org
Seniors
AARP
888/687-2277
www.aarp.org
Area Agencies on Aging
800/677-1116
www.aoa.dhhs.gov/eldfam/how_to_find/
agencies/agencies.asp
Eldercare Locator
800/677-1116
www.eldercare.gov
familydoctor.org: Seniors
www.familydoctor.org/seniors.xml
FirstGov for Seniors
800/333-4636
www.seniors.gov
Youths
Ability Online
866/650-6207
www.abilityonline.org
Association of Children’s Prosthetic-Orthotic
Clinics
847/698-1637
www.acpoc.org
Birth Defect Research for Children, Inc.
www.birthdefects.org/about.htm
Children With Diabetes
www.childrenwithdiabetes.com
Cyberteens
www.cyberteens.com
Healthy Aging: Health Information for Older
Adults
www.cdc.gov/aging/health_issues.htm
Disability Central
www.disabilitycentral.com
Johns Hopkins: Health After 50
www.hopkinsafter50.com
Generation Hope
215-872-7725
www.genhopeusa.org
MayoClinic.com: Senior Health Center
www.mayoclinic.com/health/senior-health/
HA99999
Helping Hands Foundation
www.helpinghandsgroup.org
National Institute on Aging
800/222-2225
www.nia.nih.gov
NIHSeniorHealth.gov
www.nihseniorhealth.gov
128
Shape Up America!
www.shapeup.org
Seniors’ Health
301/496-4000
www.health.nih.gov/search.asp?category_
id=27
Internet Resource for Special Children
www.irsc.org
LimbDifferences.org
www.limbdifferences.org
On the Other Hand
www.ontheotherhand.org
Sibling Support Project
206/297-6368
www.thearc.org/siblingsupport
Special Child
www.specialchild.com
STARBRIGHT Foundation
800/315-2580
www.starbright.org
SuperHands
www.superhands.us
Unlimbited Possibilities, Inc.
www.unlimbitedpossibilities.org
Winners on Wheels
800/WOWTALK
www.wowusa.com
Publications
Exceptional Parent Magazine
877/372-7368
www.eparent.com
YAZ (Youth Amputee eZine)
www.amputee-coalition.org/yaz
“Coping With a Sibling’s Disability.” Linda Lee
Ratto. inMotion. June/July 1996.
www.amputee-coalition.org/inmotion/jun_
jul_96/copsibs.html
“Early Fitting Is Key to Success.” Diane
Atkins. First Step – A Guide for Adapting to
Limb Loss. Volume 2, 2001.
www.amputee-coalition.org/first_step/
“Facing Congenital Limb Differences: A Child
Is More Than an Arm or a Leg.”
Rick Bowers. First Step – A Guide for Adapting
to Limb Loss.Volume 2, 2001.
www.amputeecoalition.org/first_step/
“Parenting Primer: For Parents of Children
with Disabilities.” Jenifer Simpson. inMotion.
July/August 1999.
aug_99/parent.html
“Promote a Positive School Experience for
a Child With Limb Loss.” Mary Vander Hoek.
inMotion. Summer 1995.
summer_95/school.html
sponsorships
First Step 2005-2007 Sponsors (in alphabetical order)
The ACA would like to thank the following organizations, companies and individuals for
their generous support through educational grants for this edition of First Step. The
funding provided by those listed enabled ACA to print and distribute this important
resource to the amputee community.
A Step Ahead Prosthetics
& Orthotics
Chilla Computer & Internet
Services
(516) 681-3484
www.astepaheadonline.com
(423) 566-1484
www.chilla.net
ABC Prosthetics & Orthotics
College Park Industries
(407) 999-8977
www.abcamputee.com
(800) 728-7950
www.college-park.com
Abilene Artificial Limb, LLP
Comfort Products, Inc.
(325) 676-8527
AbilineArtLimb@aol.com
Advanced Prosthetics
& Orthotics of America
(800) 330-8881
www.advancedpando.com
Advanced Prosthetics
Center, LLC
(402) 399-9993
www.betterlimbs.com
American Amputee Foundation
(501) 666-2523
www.americanamputee.org
American Board for Certification
in Orthotics & Prosthetics
(703) 836-7114
www.oandpcare.org
Amputee Clinic, Inc.
(423) 485-8899
www.amputeeclinic.com
Center for Orthotic and
Prosthetic Care
(502) 637-7717
www.centeropcare.com
Certified Limb and Brace
(318) 636-9145
certlimbandbrace@aol.com
Leimkuehler O&P Center, Inc.
(440) 988-5770
leimkuehler@centurytel.net
Lithographics, Inc.
(865) 693-6764
www.lithographicsinc.com
Malone Prosthetics & Orthotics
(215) 886-0185
malonepando@verizon.net
(800) 822-7500
www.comfortoandp.com
Copeland Prosthetics & Orthotics
Marshall J. Cohen, Esq.,
ACA Board of Directors
(866) 330-5300
www.CopelandProsthetics.com
Cohen & Perfetto, LLP
(212) 488-1301
Endolite
Muilenburg Prosthetics
& Orthotics, Inc.
(937) 291-3636
www.endolite.com
First Tennessee Bank
(865) 971-2897
www.ftb.com
FLO-TECH
(800) 356-8324
www.1800FLO-TECH.com
Georgia Prosthetics, Inc.
(404) 873-3725
Danzlegman@aol.com
Great Plains Orthotics
& Prosthetics, Inc.
(515) 232-3927
www.greatplainsoandp.com
Hanger Prosthetics
& Orthotics, Inc.
(877) 4HANGER
www.hanger.com
Innovative Prosthetic Designs
(662) 240-9700
bv53@cableone.net
(713) 524-3949
www.oandp.com/MPI
Myrtle Beach Brace & Limb
(800) 893-0405
mbbl98@aol.com
Nascott Rehabilitation Services
(800) 535-6556
www.nascott.com
Nebraska Orthotic
& Prosthetic Services
(402) 489-0077
www.nopsonline.com
Northern Orthopedics
(907) 561-1777
www.northo.com
Northwest Prosthetic
& Orthotic Clinic
(866) 27NWPOC
www.nwpoc.com
Ohio Willow Wood
(740) 869-3377
www.owwco.com
129
First Step 2005-2007 Sponsors (continued)
Omni Prosthetics and
Orthotics, Inc.
Progressive Orthotic
& Prosthetic Services, Inc.
(217) 344-6664
www.omnioandp.com
(877) 663-7077
www.oklahomaoandp.com
Orthopedic Appliance
Company, Inc.
Prosthetics Research
Specialists, Inc.
(800) 972-5168
www.OrthopedicApplianceCo.com
(800) 952-6744
www.prostheticsresearch.com
OrthoPro of Twin Falls, Inc.
Ryder Orthopaedics, Inc.—
Fort Myers, FL
(208) 733-0505
www.orthopro.org
Orthotic & Prosthetic Assistance
Fund, Inc.
(215) 752-5756
www.opfund.org
Orthotic & Prosthetic Design, Inc.
(239) 939-0009
www.ryderortho.com
Ryder Orthopaedics, Inc.—
Naples, FL
(239) 643-6673
www.ryderortho.com
(314) 535-5359
mwilsonopd@msn.com
Scott Sabolich Prosthetics
& Research
Ossur
(877) 226-5424
www.ScottSabolich.com
(800) 233-6263
www.ossur.com
Otto Bock HealthCare
(800) 328-4058
www.ottobockus.com
Outsource Marketing
Solutions, LLC
(860) 967-4184
www.askelizabeth.net
Paul E. Prusakowski, CPO, LPO
(352) 331-4221
http://clinic.oandp.com/
Perry Prosthetics, Inc.
(419) 872-7336
www.perryprosthetics.com
Preferred Orthotic and
Prosthetic Services
(253) 952-3887
www.PreferredOandP.com
130
Sequoia Prosthetics
A special thank you
to the ACA Corporate
Sponsors for their
continued support of
our mission!
Gold Level
College Park Industries
Hanger Prosthetics & Orthotics, Inc.
Ohio Willow Wood
Ossur
Otto Bock HealthCare
Silver Level
Fourroux Orthotics & Prosthetics
(559) 734-1060
www.sequoiaprosthetics.com
Small Business Accounting
Solutions, Inc.
Raymond Norris, President
raymondnorris@mindspring.com
Patron Level
Next Step Orthotics &
Prosthetics, Inc.
Sunrise Medical
(800) 333-4000
www.sunrisemedical.com
Team O and P, Inc.
(281) 364-8326
www.teamoandp.com
TMC Orthopedic
(713) 669-1800
www.tmcortho.com
Thank you to the
National Center on Birth
Defects and
Disabilities, Centers for
Disease Control and
Prevention (CDC), for
their support of this
publication.
ACA’S Action Plan for People with Limb Loss
APPLL is ACA’s plan to address the prevention of secondary amputations and the
problem of access to appropriate medical care for all amputees in the U.S.
1
APPLL has two goals:
Promoting healthful
lifestyles by preventing
other health conditions
that may result from your
amputation, including
further surgery.
2
Access to prosthetic
care and coverage
for all people with
limb loss in the U.S.
You can be a part of the solution!
Visit the advocacy section of the ACA Web site or call us to learn how you can help!
®
www.amputee-coalition.org/aca_advocacy.html
888/AMP-KNOW (267-5669)
appll@amputee-coalition.org
A Publication of the Amputee Coalition of America
Body Image, Relationships and Sexuality
after Amputation
Easy Read
First Step - Volume 4, 2005
Original article by Sandra Houston, PhD
Translated into plain language by Helen Osborne of Health Literacy Consulting
Amputations affect our lives in many ways – our body image, relationships, and
even sexuality. Here is information about these issues along with ways to deal with
them.
Body Image
We all think about how we look. Starting as
children and throughout life, we have thoughts
and feelings about body image – our shape,
size, and other physical attributes (such as hair,
teeth, and skin).
Our body image changes as we go through life.
Sometimes our body image suffers when we see a movie star or fashion model and
think we need to be just as thin or pretty. Our body image can suffer even more
after an amputation.
©Amputee Coalition of America
Distributed by Amputee Coalition of America
900 E Hill Avenue, Suite 285
Knoxville, TN 37915
888/267-5669 acainfo@amputee-coalition.org
Page 1 of 6
As amputees, we not only have to deal with changes in how our body works and
feels but also how it looks. The more that we focus on what is missing – not just
the limb, but also the things we could do before – the more likely we are to get
depressed and angry. In fact, studies show that when amputees have a negative
(bad) body image, they are less apt to be happy with life.
It does not have to be this way for you. Most amputees are well-adjusted and lead
happy and full lives. Here are some ideas of things you can do:
• Know that you are still the same person inside that you were before the
amputation. It may help to think of yourself as a whole person who just happens
to have a missing body part.
• Focus on learning new ways to do things you enjoyed before. But sometimes
you may need to be extra clever or creative.
• Don’t limit yourself with the label of “disabled.” The focus should no longer be
on what is gone, but on the future.
• If you are learning to use a prosthesis, your body image is likely to change once
you feel more comfortable with it. You will know this is starting to happen
when you begin to feel naked without it!
Knoxville, TN 37915
Page 2 of 6
Relationships
Relationships come in many forms. We are can be very
close to some people and just friends with others. No
matter what kind of relationships we have, they almost always improve the quality
of our lives.
People without relationships often feel lonely, isolated, sick, and depressed. When
people have no one to talk with or nothing to distract them, they may think only
about their problems and pain.
Some amputees avoid relationships because they are so worried about body image
that they think other people won’t like them. They may fear rejection and stay
away from friends, relatives, and even strangers. But this fear is seldom true.
Studies show that being an amputee is no longer a cause of rejection. An example
is Heather Mills (an amputee) who used to be married to Paul McCartney (a former
Beatle).
Knoxville, TN 37915
Page 3 of 6
Relationships help make us feel whole – both emotionally and physically. But this
does not mean you always have to be part of a crowd. Here are some ways to have
healthy relationships:
• Stay involved with people you already know and share feelings for.
• Join an amputee support group where you can meet other amputees
who live full and happy lives. This way, you can know that you can
do the same.
• Talk with important people in your life about your feelings as an
amputee. This includes feelings of anger, fear and frustration. It also
includes how the other person feels now that you are an amputee.
Your relationship is likely to be stronger after open and honest
conversations like these.
Sexuality
We are all sexual beings. This term refers to all the ways we express loving
feelings and emotions. Our whole body responds to sexual attraction. Sexuality
includes feelings of arousal (expressed by touching, kissing and caressing) as well
as sex (sexual intercourse). Touching and being touched are basic human needs. In
Knoxville, TN 37915
Page 4 of 6
fact, studies show that babies who do not get touched a lot develop later than those
who do.
Some amputees say that limb loss limits their sexuality. This can be due to a
negative body image. It can also be because people fear they will be rejected by
their spouse or partner. It is important that you talk together about how your
changed body looks, feels, and works. Talking about this now can help prevent
misunderstanding or hurt feelings later on.
Our sensuality and sexuality always begin with us. Here are some things you can
do:
• Focus only on the sensations of pleasure that you feel at the moment.
Do not keep thinking about how you want to perform.
• Alternate between focusing on your partner’s pleasure and your own
sensations of arousal.
• Give yourself permission to try new ways of being sexual. After
amputation, you may want to find new positions that are more
comfortable. For instance, you could add some pillows if you have
problems with balance.
Knoxville, TN 37915
Page 5 of 6
• Explore and enjoy finding out ways that work best for you and your
partner. Amputees all over the world have returned to loving, sexual
relationships after their amputation. You can too. This will help with
your body-image, relationships, and sexuality.
About the Author
Sandra Houston, PhD, is a clinical psychologist and retired professor of
psychology from the University of Central Florida. She had a private practice
for 30 years, specializing in marriage and sex therapy. She has been a hipdisarticulation amputee since 1982. With over 50 professional publications and presentations,
she continues lecturing and writing in the field of rehabilitation psychology.
Translated from Altered States - Our Body Image, Relationships and Sexuality
http://www.amputee-coalition.org/first_step_2005/altered_states.html
Knoxville, TN 37915
Page 6 of 6

THe New exPeRIeNCe Of lImB lOSS

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