ubpn camp 2012 highlights the emotions of living with erb`s palsy

Issue 26, Spring 2012
FREE
The magazine for
Brachial Plexus
Injuries
UBPN CAMP
2012 highlights
PAGES 10 & 11
The emotions of living
with erb’s palsy
PAGE 7
what do you do with
your arm when you run?
PAGE 16
Special thanks to
Blume, Goldfaden, Berkowitz, Donnelly, Fried, & Forte,
the law firm whose generosity has made this issue of
Outreach possible. If you desire information about the
legal rights of yourself or your children, or wish a referral
to a law firm in your area that is experienced with brachial
plexus injuries, contact John Blume or Carol Forte.
Blume, Goldfaden, Berkowitz, Donnelly, Fried, & Forte
One Main Street, Chatham, New Jersey 07928
(973) 635–5400 • www.njatty.com
in this issue
Raquel schroeder, a synchronized swimmer with a bpi
12 What it
Takes to Win
The mother of an award
winning synchronized
swimmer tells her story.
by Tina Boales
5 Determination
From across the pond
we take Matt’s journey
from playing cricket to
making music.
by Matt Parsons
7 The Emotions
of Erb’s Palsy
by Brenda Harper
14 Lending a
Helping Hand
Rachel explains how
her injury is really just
a blessing in disguise.
by Rachel Schroeder
16 what do you
2 A Letter from the UBPN President
do with your
Arm when you
run?
3 Information for New Parents
What started out as a
topic on ubpn.org/forum
turned into a full-fledged
service for BPI people.
4 A Letter from the Board of Directors
by Dan Aldrich
9 Recovering Money Damages for OBPIs
18 do your
10 UBPN Camp 2012
20 Spotlight On
Outreach Magazine • SPRING 2012
A mother’s view of the
trials and tribulations
BPI people deal with
from day-to-day.
best with what
you have
Thoughts on the fairness
of life.
by Keith Pancake
1
a letter from the UBPN president
Greetings UBPN community! It’s been quite a while
since I touched base but we made it into another
year and it is now half over. As with any family, UBPN has
had its share of trials and tribula- tions, but I would like to
reflect on our accomplishments from 2010 and 2011 and
most recently 2012:
1. We successfully hosted UBPN camp 2010 (Find Your way) and 2012
(Alternative Me).
2. We completed our second annual Fun Run & 5k and our third is
scheduled for October 13th in Halfmoon, New York.
Board of directors
2011–2012
Karan Allrich
President
new york
Rich Looby
Massachusetts
Julia Aten
washington
Vice Presidents
Dan Aldrich
Traci Foster
california
pennsylvania
Anise Braggs
Christopher Janney
missouri
california
Secretary
Kara Rutherford
Tanya Jennison
TEXAS
new york
Claudia Strobing
south carolina
Treasurer
Julie Furrier ·
cpa
Amy Johnson
Massachusetts
3. We aired Spotlight On, our documentary on bpi which now has
minnisota
tinyurl.com/ubpnboard
more than 4 million views.
Outreach Magazine • SPRING 2012
outreach founder
Bridget McGinn
4. We welcomed new board members:
l Julie Furrier, treasurer
l Dan Aldrich, co-vice president
art directon & Design
Jennifer Patankar
l Kara Rutherford
www.jenudi.com
5. We welcomed our new designer and editor, Jennifer Patankar, to help
continue this publication.
OUTREACH MAGAZINE is a free publication
created by: United Brachial Plexus Network, Inc.
6. We constantly are updating www.ubpn.org and our social networking
sites for people searching for support.
LETTERS TO THE EDITOR and SUBMISSIONS
should be sent to outreach@ubpn.org. UBPN
reserves the right to edit and use submissions in
7. W
e traveled to the prestigious Narakas symposium in Lisbon Portugal
and presented our mission and vision statements.
8.We are attending the Johns Hopkins Symposium in September 2012
We said goodbye to board members: Lisa, Courtney and Judy. We will also be saying
print and electronic media.
ALL OTHER CORRESPONDENCE related to
subscriptions, renewals or change of address,
can be directed to outreach@ubpn.org.
The United Brachial Plexus Network
goodbye to additional board members in the near future. This means we need strong
(UBPN) is a registered non-profit 501(c)3
community members to let us know they want to get involved and to continue to build
organization devoted to informing, supporting,
on our successes. If you have special skills or just want to get involved, please send me
and uniting families and those concerned with
brachial plexus injuries worldwide.
a message to richard@ubpn.org. Let’s get the discussion started on how you can help.
mailing address
United Brachial Plexus Network
1610 Kent Street
Kent OH 44240
Rich Looby
call
(781) 315-6161
President
online
www.ubpn.org
info@ubpn.org
cover photo by Amber Jennison
2
©2012 UBPN, INC., ALL RIGHTS RESERVED.
Information for Parents of a Newborn
with a Weak or Paralyzed Arm
If your newborn’s arm is noticeably weak
Research the resources for a pediatric
thest away from the origin of the nerves,
or completely paralyzed, your child may
brachial plexus injury specialist. These
they are in the most danger of being lost.
have a brachial plexus injury (bpi), and
are doctors who specialize in the treat-
they affect the network of nerves that con-
ment and repair of these types of inju-
The neurosurgical techniques most often
trol the muscles of the shoulder, arm, el-
ries in babies. Their expert assessment
used to repair a severe injury are: explora-
bow, wrist, hand and fingers.
of your child will define whether or not
tion of the brachial plexus nerves, testing
the injury is temporary or permanent
the nerves to see if the brain is receiving
and severe.
messages from them, removal of the scar
sis of one or both arms and often occurs
during the birthing process when one or
both sides of the neck are stretched during delivery. Injuries sustained during the
birthing process are known as Obstetrical
tissue that has formed around the nerve
Timeframe for Recovery
and nerve grafting. This first surgery is
The nerves of the brachial plexus originate
and 12 months.
in the neck. They branch down the arm to
usually done between the ages of 6 weeks
Brachial Plexus Injuries, obpi.
the fingertips.
Handling Medical Costs
The mildest form of obpi occurs when
When a nerve is severely injured, it has to
Contact your health insurance company
regrow from the neck down the arm. Re-
to see if they have a program for children
generation of nerves happens at a slow rate
with special needs. Your state may have
of one inch or three centimeters per month.
programs that will give your child access
As they regenerate, movements of the mus-
to free or low cost in-home therapies. In
for regaining functional use of the arm.
cles associated with that nerve will begin to
some states it is called Early Intervention
appear. At first they will be very weak and
for ages zero to three. Medicaid programs
The First Weeks of Life
the child will use gravity as a helper. As the
may be an option for free or low-cost sec-
muscles get fully innervated (connection to
ondary insurance.
Handle your baby’s neck and arm care-
muscle), they will gain strength and move
fully. Be aware of the positioning of your
without the assistance of gravity.
the nerves have been stretched. When
the nerves have been ruptured (torn) or
avulsed (pulled out of their spinal socket),
surgical intervention may be the only hope
baby’s arm, especially when you lift or car-
Your health insurance may cover travel
to out-of-state clinics. If not, free or dis-
ry your child. Family, friends and caretak-
A real turning point in your child’s prog-
counted medical airfare is available from
ers will need to be taught that pulling or
nosis will be the presence or absence of bi-
many airlines.
lifting by the arm can cause further injury
ceps function at the age of three months.
and pain.
Specialists worldwide agree that if a child
does not have bicep function by this time,
Emotional Support
Doctors & Therapists
surgical repair is discussed.
The best support can come from a coun-
One of the first steps you may wish to
Time is of the Essence
needs children, and from other families
a Pediatric Neurologist experienced with
Surgical repair is one of the most impor-
support group can be very helpful for the
BPI to define the nature of your child’s
tant factors impacting recovery. When a
entire family.
injuries and whether or not there are any
nerve is injured, it regresses back to its
other complications.
origin in the spinal column in the neck. The
In addition, online communities offer
problem experienced is that within 12–18
support and information from. Anger,
Take your infant to see a physical or occu-
months of the injury, the muscles that have
sadness and grief are normal and impor-
pational therapist to learn how to do range
not already been innervated will have atro-
tant feelings, and there are resources and
of motion exercises. Choose a therapist that
phy and intervention is no longer possible.
support available to help you and your
understands obpi.
Since the muscles in the hand are the fur-
family move through these emotions.
consider is making an appointment with
Outreach Magazine • SPRING 2012
BPI can result in full to partial paraly-
selor who is experienced with special
experiencing similar challenges. A local
3
letters from the board of directors
A Fond Farewell
Lisa Muscarella recently stepped down from the
Without Lisa’s efforts and willingness, substantial projects, like
ubpn Board of Directors. Lisa served many years in
Spotlight On, very well might have not been completed.
various capacities with the goal of helping others who
experience the struggles related to brachial plexus injuries. Lisa
Although Lisa is taking a break from ubpn for now, her
began her journey with ubpn through her struggle to learn more
true devotion to prevention remains, and she is already get-
about bpi in order to benefit her son, Tanner, who was injured at
ting involved in another project. Lisa would like to express
birth. Most notably, Lisa has worked on prevention. She eagerly
her sincere gratitude to ubpn for allowing her the honor
shared information to the community and to those in the medical
of serving the bpi community, and ubpn would like to ex-
field concerning preclusion of these injuries during childbirth.
tend a considerable and sincere “thank you” to Lisa for all
Lisa has donated her time, energy, knowledge, experience and
her efforts and accomplishments thus far. Words cannot
compassion to ubpn and the community.
express our appreciation enough.
Outreach Magazine • SPRING 2012
Spotlight On is available online at tinyurl.com/ubpnstore
Judy Thornberry joined ubpn in 2004 and was a vo-
ubpn 2010 (and continuing for Camp 2012). Judy also helped
cal proponent for ubpn for over 6 years, contributing
with camp activities such as registration and adult obpi work-
to the ubpn mission in varying capacities. Most nota-
shops, as she had done at previous camps. Judy also attended the
bly, Judy laid the foundation for the ubpn MedicAlert Sponsor-
prestigious Narakas meeting, where she participated on a panel
ship program (through the generosity of The Chrissie Collins
to answer questions and provide perspective for bpi experts.
Children’s Fund). MedicAlert Foundation provides free member-
Judy left the board last year and continues to support ubpn as a
ships to all children under the age of 18 referred by ubpn. This
community member. We thank Judy for her service and the hu-
program has been a tremendous benefit for our community. Judy
mor she brought to the board of directors.
was also instrumental in identifying Trout Lodge, home of Camp
Find out about the next UBPN Camp at tinyurl.com/ubpncamp
Courtney Widzinski first joined us at ubpn camp
from fellow tbpi people. She gave her time and heart to those
Lake George. It was her first camp and she brought
who were looking for answers and help – the same reason why
her mom. Courtney has tbpi from a car accident. She
Courtney came to her first camp.
was loud, brash and under no circumstances did she need any
help from anyone for anything – even with carrying her over-
We miss Courtney. Her decision to leave demonstrates that peo-
packed luggage. Although she didn’t realize it at the time, the
ple do move on with their lives in spite of bpi, and we applaud
ubpn community did help Courtney – she has spoken about this
her success in doing just that. Courtney has started a family and
to the people who are close to her. In return, Courtney gave back
is now expecting her second addition to the family. Although
to ubpn and its community. Courtney became a board of direc-
Courtney has moved on, she really hasn’t left – she is still active
tors member in 2003; she served for 6 years. She became part of
on the ubpn forums, she helps out with email and phone ques-
the executive board of directors as Secretary and was instrumen-
tions and has her mom helping with store items. Congratula-
tal in getting tbpi pages written for the ubpn website. She
tions, Courtney, and thank you for your contributions to ubpn!
served on the Open Arms Committee where she answered inquiries
Check out the UBPN Forums at ubpn.org/forum
4
obpi experience
Determination
Like many injuried people I have limited movement; I can’t straighten
my arm, I can’t turn my arm over and I can’t put my hand behind my
back. It’s all I have known and I can’t really imagine what it would
be like to have a fully functioning arm. I believe that it has actually
shaped my personality, and my world around me.
If it wasn’t for my bpi I would not be
going to the training sessions because I
with as much determination as I. They
who I am today. I could tell stories about
loved the game. My coach started taking
thought it may be a good idea to go for
growing up with bpi. Such as, when my
notice of my determination; he took me
tryouts at another nearby county. I did,
parents saw the firsts sign of movement,
under his wing and started to focus on
and I was called back for a second tryout.
but what I really want to talk about is de-
developing my skill. He recommended
termination and it’s a factor in achieving
that my parents take me for tryouts to
my goals.
Outreach Magazine • SPRING 2012
by Matt Parsons
represent my county. I wasn’t selected to
play for them so I went back and played
When I was 10-years-old I started playing
for the school. In my last year I played var-
cricket at school. I started to develop a
sity cricket; that same year I was featured
passion for it; every spare minute I would
on the front page of our local newspaper
play it with my friends. We had several
for winning a game against a team we
teams at school, and I was selected to
hadn’t beaten for 20 years!
play. The best team was called the Colts
and I wanted to play for them. I saw the
Another year passed and I moved on
other boys playing for them; I wanted to
to another school. I was sent to tryouts
be that good. Unfortunately I was never
again, and the same thing happened – I
selected for the team.
failed to get onto the team. I really want-
The school year ended and so did the
as good as the others.
ed to play county cricket; I wanted to be
cricket season. During the winter we
used to have cricket training. I was always
So I kept going; my parents were filled
5
Finally, I was accepted into to play county
After several years my writing ability de-
I still find certain things hard when it comes
cricket, and I played until I was 19. I was on
veloped, and I found my voice. I recorded
to playing guitar, but like everything else
the verge of playing professionally.
a full-length album titled Inner Strength.
that has come my way, I deal with things one
I teamed up with my friend again. This time
day at a time, and I find new ways of doing
I had always had a passion for music and even
I worked with a 16-piece string orchestra. I
them. You can excel at whatever you choose.
though I was playing a lot of cricket, a part
also decided that I wanted to release my al-
of me knew that I loved music more. For my
bum on my own record label: Leftarm Records.
18th birthday, I decided that I wanted a guitar.
and from the years I spent playing cricket. I
I had grown up playing percussion because
***
it was good exercise for my arm, but I always
dreamt of playing guitar. I thought that I
I am telling you these two stories because I
couldn’t because I can’t turn my arm to play
was told I wouldn’t be able to play team sports
the chords.
learned that you may not see results right
away, but if you take your time the results will
last you a lifetime.
or catch a ball. I was told I wouldn’t be able to
Be creative and positive, have focus and de-
play an instrument
termination, and perhaps most important of
It wasn’t until one day I picked up my fathers
old guitar, and I realized could play it upside
I learned a lot from making Inner Strength
all believe in yourself.
Some part of me thinks it was possibly more
down. I learned quickly and started writing
from the determination of my parents than
my own songs. After several years of playing
of my own that I was able to succeed. I am
Matt is currently recording his next
I decided that I should record a demo album.
thankful for all the time they spent driv-
album with a new band. He can be
I asked a friend if he would help me put an
ing me to cricket training and games. With
found online at: mattparsons.net.
album together.
enough motivation and belief that you can
over come your problems.
recording at Angel Studios in London
About the author
a mother’s story
emotions
The
of
Erb’s Palsy
by Brenda Harper
but we continue to persevere. This injury has been an unfortunate battle
for us. It affects the whole family as we face the world beyond the safety
of our home. Physically, bpi can be dealt with through therapy, training,
and surgery but the emotional effects can last a lifetime.
Positive reinforcement is not about the
In the beginning of diagnosis, all we fo-
and didn’t seem to notice he was different.
disability but about the abilities. We know
cused on was the physical handicap; we
He would proudly say when asked about
because our family is continuously working
didn’t think about each others’ emotions.
his arm, “I got Erb’s Palsy.” He didn’t have
to overcome the hurt and constraints that
Therefore, we went full force with physi-
problems trying to do things like other
comes along with Erb’s Palsy.
cal therapy. We soon realized that was
kids. There were times when he would get
only part of the battle.
Our son, Jonathan, was born November
frustrated, but he kept trying until he got
it. Before he started school we accepted his
28, 1994. He weighed eight pounds four
Jonathan had two surgeries to try to help
injury as simply physical; we had no idea
ounces and 21 inches long. He was a
improve the mobility of his arm. At 8-years-
what we were about to face emotionally.
healthy baby in every way, except he
old he had his first surgery to give him more
sustained an obpi during delivery. His
shoulder rotation by moving muscles. This
heart rate was dropping and the doctor
surgery gave him about 10 percent more
made the decision to use the forceps. The
use. At age 15, he had another surgery to
obpi was to the right shoulder causing a
give more extension at the elbow. Jonathan
limp right arm and loss of feelings due to
requested it; he wanted to help himself. So
stretched and torn nerves. His right arm
we agreed. After hours of surgery nothing
is about 25% shorter than his left with a
could be done. The bone had formed into
claw-like hand function.
an L-shape. When he woke up in recovery
Outreach Magazine • SPRING 2012
Erb’s Palsy has been a challenge for our family to live with emotionally,
and saw that his arm was in the same posiJonathan’s name means “A gift from God”
tion, he was devastated. His words were, “I
or “God has given.” We prayed for him
guess God didn’t want it to be.” His hopes
and believe God gave him to us. It is our
of medically improving his arm were lost.
belief that God does not give an imperfect
He hasn’t brought it up since; I guess he’s
gift. Therefore we had to work with this
holding it within.
condition to the best of our abilities. After
all, it could have been worse.
Jonathan’s infant years were his better
years with coping. He was a happy child
The harper family
7
Elementary school was not bad for Jonathan,
feeling as if he didn’t have any meaning-
Recently I saw just how courageous
but I could see him beginning to question
ful qualities. He had to deal with these
Jonathan really is, as he stood before his
his condition. He wanted to participate in
moods along with normal teenage issues;
class of 40 students and told his story. He
school activities that were difficult.
he wanted to fit in with others. Eventu-
spoke about how he faces his disability.
ally he found loyal friends and things got
He made them aware of what Erb’s Palsy
For instance, he wanted to play the violin
better. His friends are able to look past his
is and how he deals with it every day.
in the school orchestra. The music teacher
condition and him emotionally. We thank
Jonathan said, “I face this condition every
tried to engineer the instrument so that he
God for them.
day from the time I wake up until I go to
bed at night and teasing doesn’t help. I
Positive reinforcement is not about disability.
It is about ability. We know because our family
is continuously working to overcome the hurt
wish my arm wasn’t like this; but it is what
it is.” I was very proud of his courage.
Jonathan’s future goals are to finish high
school, go to college and in audio produc-
Outreach Magazine • SPRING 2012
and constraint that comes with Erb’s Palsy.
tion. He wants to earn a living and support
could hold the violin and wand to play. It
Dealing with the opposite sex is extremely
Plans for a job, driving, living alone, and re-
didn’t work. Jonathan began to get discour-
hard for Jonathan. He is a catch but feels
lationships may bring up other issues, but
aged. The teacher suggested a different
as if he can’t get a girl to like him. He tells
he has the foundation to build upon. We
instrument, the trumpet, but Jonathan’s
us that he gets turned down when he
hope he continues to spread awareness
reaches out to a girl. He blames it on his
about these injuries so others may under-
arm. Is this a teenage thing or the emo-
stand this condition, and hopefully there
heart was no longer in it.
himself.
Some of the challenges he endured were
tional affects of living with Erb’s Palsy?
will be a way to stop obstetric brachial plex-
getting on and off the school bus, carrying
He feels his life would not be as bad if he
us injuries in the future.
his lunch tray, p.e., tying his shoes, riding
wasn’t injured. We say, “maybe.” He is still
a bicycle and sports. Some things weren’t
young and in time things will change. So
Dealing with Erb’s Palsy is difficult for
very hard; others were very difficult. He
we encourage him to wait and see.
Jonathan and our family. As his parents,
had to learn to do most things a different
way. This was the beginning of his low
self-esteem attacks.
we have to constantly encourage him
His passion for music is his escape from
that he is alright; especially at those times
his pain. Writing lyrics helps him to release
when all he sees is that he is different.
his feelings. He spends hours listening and
By the time Jonathan got to middle school,
researching music. He joined the master
Continuing physical therapy and surgery
the affects of his injury started draining
chorus at school and it has been positive for
research is a must. Emotionally facing
him emotionally. Bullies emerged and he
him; however he takes constructive criti-
the world with this injury requires steady
was teased. As loving parents we constant-
cism very hard. We think it holds him back
encouragement, motivation, and under-
ly reinforced his self-esteem. His grades
from doing his best because he thinks the
standing from family and others. How we
were low and he didn’t want to participate
criticism is about his arm.
in any extracurricular activities. Eventu-
8
deal with problems it is the key. It is not
about disability, but about abilities.
ally we took him to a psychologist to get
Jonathan has also made great achieve-
help. They wanted to put him on medica-
ments is in Choi Kwang Do. He has over-
About the family
tion to give him a boost of self confidence.
whelmed his instructors with his strength
For more information about living emotion-
We declined it thinking that he needed to
and perseverance. He was selected to be an
ally with Erb’s Palsy, contact Robert and
find a way of accepting his condition; he
assistant instructor. Jonathan is just steps
Brenda Harper at brenh 1@bellsouth.net.
couldn’t rely on medication forever.
away from earning a black belt. When he
Jonathan is currently in his junior year at
is performing we cannot tell which arm is
Stephenson High School in Stone Mountain,
High school brought on new issues that
the stronger one. This has given him a big
Georgia. We are dealing with his emotions
attacked his self-esteem. He began slip-
boost of confidence. His motto is: I can do
one day at a time.
ping into moods of worthlessness and
all things through Christ who gives me strength.
A word from our sponsors
Recovering Money
Damages for OBPIs
Most OBPIs are caused by negligence of the person deliver-
pacted and pulls on the head of the baby causing the nerves of the
ing the child. Many families turn to the legal system to obtain
brachial plexus to be stretched or pulled from the spinal column.
funds to pay bills for treatment and to compensate the child for
If a child sustains a bpi at birth parents should promptly consult
his or her potential disability, pain and suffering.
a law firm with experience in handling these cases. By the time
Blume, Goldfaden has successfully represented over 150 injured
a child is old enough to make a decision to pursue a claim on its
children and their parents. We have revocered amounts be-
own it may be too late due to notice requirements or Statute of
tween $300,000 to $2,000,000. To understand why these inju-
Limitations issues, depending on the jurisdiction. Therefore it
ries are often caused by negligence it is necessary to understand
is important to consult with an experienced lawyer as soon as
the mechanics of the birth process.
possible to obtain compensation for the child, for losses caused
by the injury and for appropriate medical care.
As the child comes down the birth canal a shoulder can become
trapped behind the mother’s pelvis. This is called shoulder dystocia.
Handling a bpi case requires extensive medical knowledge and a
The doctor or midwife may not realize that the shoulder is im-
familiarity with medical literature on the subject. It also requires
a law firm with the resources to properly prepare and try the case
Shoulder trapped
behind pubic bone
if necessary. In order to present the case numerous experts must
Outreach Magazine • SPRING 2012
by John M. Blume
be engaged. For example physicians, nurses, economists, employability experts, therapists, life care planners all may be needed for
Brachial
Plexus
one case. Although the actual time of participation in the process
by the client is not significant, the law firm will be spend many
hours and substantial sums of money to prepare a case.
Parents not only have a responsibility to care for a child but also
to see that their child is not deprived of its rights. Law firms
Pubic Bone
Head
Delivered
that handle medical negligence cases generally do not charge
for consultations. Almost without exception medical negligence
cases are taken on a contingency basis which means that the
BPI
lawyers only get compensated if they are successful. The compensation or fee is a percentage of the recovery and must be approved by a judge in most jurisdictions.
About the law firm
This publication was made possible by Blume, Goldfaden, Berkowitz,
Donnelly, Fried and Forte. The author, John M. Blume, can be reached
Lateral Traction on Head
at (973) 635-5400 or jblume@njatty.com.
9
UBPN CAMP 2012
“ubpn camp is for people with my injury
and their families. I love it! I’m never embarrassed about
the way my arm looks. I never feel self conscious when I do
something in an improvised way. They all know exactly how
I’m feeling. I feel completely perfect. How many people can
say that they feel perfect? I have my insecurities, but at camp
it all melts away. Usually there are never more than one or
two of us in the same area.
Some of us had never met another kid with a bpi in our lives
until we went to camp. At camp there are lots of us. We take
over. For once, it’s the un-injured people that are the odd
ones out. It’s an amazing feeling. We can completely be ourselves, and for once in our lives we can find people that can
relate to us. The adults there with injuries treat the kids with
respect. They don’t treat us like kids—we are equal.
This year was my fifth camp, and I can’t wait for the next one.
Hopefully word of ubpn will spread farther and we’ll have
even more people connecting. I’m already starting to branch
out and connect through Facebook groups and a ubpn forum. ubpn Camp is truly a unique experience. I hope everyone will come back in two years.”
—Kailyn, age 15
a mother’s story
What it Takes to
{Win}
by Tina Boales
It would be 9 years before my husband and I would celebrate the birth
Outreach Magazine • SPRING 2012
12
of our second child, Raquel. We were excited to be parents once again.
On the day of her birth the drama quickly
blood, sweat and tears, we decided on sur-
In September 2009, Dr. Michael Pearl said
started; I was transported to the wrong
gery. Our daughter Raquel was 5-years-old
she was ready for a sport and suggested
hospital. As the day unfolded many quirky
when she underwent her first surgery. It
watersports. Raquel was in the water
and unsuspecting things occurred and ul-
was not an easy decision and much time
from the age of 4-months-old for therapy.
timately my daughter was born with an
was spent on research and opinions for her
Swimming was a big part of her life so it
obstetrical brachial plexus injury. After
Erb’s Palsy. We hoped surgery would give
seemed like a natural choice; soon after
one week we settled down and came to
her improved movement.
we found a small flyer advertising tryouts
the realization that we would have a long
physical, emotional and financial battle
ahead of us.
for synchronized swimming.
In February 2006, the surgery was performed by Dr. Michael Pearl and his team
The flyer read “Does your child like to
at the West Los Angeles Kaiser brachial
swimming and gymnastics?” It sparked
Only time and caring people would be the
plexus clinic; it went very well. We already
my curiosity and I rushed her to the try-
indication of a healing road. After enduring
knew that Raquel was a resilient child and
outs the next day. She did well on her the
every type of therapy and shedding endless
would continue to fight.
swim test and she seemed interested in
the music and the rather difficult syn-
and obstacles. When you feel your person-
chronized swim movements that the older
al best you have ultimately won.
girls were performing.
touch with donors and let them know her
training progress and achieved goals. She
encompassed training, school work, men-
In 2010, Raquel finished her first season
toring bpi children, helping others, work-
One of the coaches told me to me bring
with five gold, six silver and two bronze
ing with autistic children at her school,
her back and let her swim with them for
medals for her solo, duet and team rou-
chores and keeping a positive attitude. She
a full week—either she will like it or she
tines. She went on to compete in the 2010
even donated her birthday money to ubpn.
won’t. I did not initially mention her bpi. I
Summer California Amateur State Games
was afraid someone would say, “I’m sorry, – an Olympic Committee event.
championship coaches, Poppy Carlig and
She was chosen to be one of five open-
Yuliya Roysental, she was ready to go to
in. Nobody noticed anything in the begin-
ing ceremony torch runners from 9,000
the National State Games of America and
ning, but I eventually told the coach of her
athlete applicants. She would become the
compete. The weekend of August 6th was
condition. She said, “We’ll work with her.
first synchronized swimmer in the 22 year
triumphant! She took gold for her solo
She’ll do fine.”
history of California State Games to carry
and gold with her team. I’ve never seen
the torch in front of a crowd of 30,000 and
her feel so relieved that she finally was
As the season progressed Raquel entered
to also have her story told. She received a
able to personally add a gold medal to
into novice competitions, placing last
standing ovation. Raquel won silver for
everything she encompassed and accom-
overall at the first three meets. She finally
her duet and a bronze for her solo. She
plished beyond athleticism.
said to me that she had enough coming in
would qualify to compete in the 2011 Na-
last place and confessed that some of the
tional State Games of America.
She learned that winning is more than
I told Raquel that she holds the key to bpi
September 2010 rolled in fairly quickly
thing that makes a true athlete.
awareness as well as her own success. I re-
and we knew her second season as an in-
minded her that giving up is not an option
termediate swimmer would bring hard
for fighters.
work and challenges. Raquel was moti-
Tina Boales is the director of the
vated and she wanted to show the world
synchronized swimming team
just hard work. Winning is not the only
girls on her team were making fun of her.
Winning is not what makes an athlete, its
that there was more to winning. She set
attitude and how you play the game. You
up a donation page at FirstGiving, ti-
About the author
“San Jose–South Bay SynchroFISH” in Northern California. Raquel swims
can measure your success in many ways.
nyurl.com/raquelboales, to raise funds for
for the Santa Clara Aquamaids. To discuss
Winning is ultimately just a part of the
ubpn. She set a goal of $1,500; she raised
Raquel’s journey or synchronized swimming
goal you set out to accomplish. Your goal
$1,508.
send a message to SJ2540@yahoo.com.
Outreach Magazine • SPRING 2012
this is not the sport for her.” At the end of
the week I was amazed that she fit right
By July 2011, after training hard with two
must include many personal accomplishments, including overcoming your fears
She raised money for one year. She kept in
13
obpi experience
Lending
a Helping Hand
Outreach Magazine • SPRING 2012
by Rachel Schroeder
My Brachial Plexus Injury is a blessing.
It has given me treasured
memories, life-long friends and the opportunity to spread awareness
and connect to other people like me. Some may think it is a disability –
something that holds you back, but I feel joyous when I see the positive
things about me and the good things I have achieved.
At the beginning, my bpi was a struggle.
hood while at the Texas Children’s Hospital.
At the hospital I made friends with other
My parents told me when I was a baby
I received my operation on my injured
bpi kids; and I also made friends at family
I never crawled. Instead, I would drag
arm there. I remember nurses offering
picnics. The picnics are for injuried peo-
myself across the floor. I would compen-
me different choices of sleeping gas: ba-
ple and their families. They are a nice get
sate by using other parts of my body. I
nana or bubble gum. I chose bubble gum.
together for people meet others who are
even started to use my toes to draw and
I look back and think this was funny be-
going through the same thing. It is a way
write. My parents had to direct me to use
cause I am not much of a gum chewer
for us to see that we are not alone.
my right arm. I must have thought that if
these days.
What I love most is looking at old photos
I could not use one arm, than I could not
Another memory I recall are nurses
of me wearing my “Statue of Liberty” cast.
about their sadness and the anger they
wheeling me around the halls of the hos-
It embraced my waist and crawled up my
felt when I couldn’t do some things easily.
pital in a red wagon, most of the time I
left arm raised just like the Statue of Lib-
Although, these were great obstacles to
was on my way to a checkup. As I remem-
erty. While at the hospital I decorated my
overcome; I did, eventually.
ber, I was carrying my white plush cat
cast with Hello Kitty stickers.
use the other. My parents also told me
named Crystal that my mom had bought
14
My injury gave me many memories that
me. I took her everywhere. To this day
Having this injury has given me lifelong
I will cherish for the rest of my life. Most
she remains one of my favorite childhood
friendships. I have had several different
of my memories are from my early child-
treasures.
therapists. One of them was named Me-
my life. Our friendship was strong and prevailed as we still found time to be together
on our own. However, Melissa was not the
only friend I met because of my injury. I remember my other therapists and the secretary at my therapist’s office. She was part of
my cheering squad.
One of my friends, Diana, actually lived
nearby; there are people like you in the
places you least expect them to be. Parents
especially like the picnics because it is a
great opportunity to talk to other parents.
In fact, my parents found my surgeon
through one of these gatherings. I know
that I will make more friendships in the
future because of my bpi.
An important thing to remember about
BPI is that it is a chance to reach out to others. I am currently a senior Girl Scout, and
am working toward achieving my Gold
Award project. I am going to focus my
project on bpi—either by spreading the
word or by helping children who are new
to the injury. It is about connecting with
different people of all ages who have been
affected by bpi.
A few days ago, I met my doctor and ended
them advice about dealing with bpi, and
told them how it never stopped me from
left for helping others. I hope that I can
help other families with their battles with
doing what I wanted.
bpi, and inspire all people with bpi to never
For instance, to help my arm grow stron-
important thing.
ger I took horseback riding lessons. I always loved horses. I started going to a
farm once a week for lessons. My bpi never
stopped me from getting on a horse, and it
certainly never stopped me from winning
my two first prize blue ribbons in horse
shows. I also took swimming lessons. My
family has a pool that I still use in the summer to exercise my arm.
I believe that anything is attainable with
hard work and a good attitude. Communicating with others gives me inspiration
to do anything I can to help. I believe that
anyone, bpi or not, can make a difference
by doing even the simplest of things. Wearing the bpi bracelet and silver ribbon are
great ways to spread the word to people in
your day-to-day life. I keep my ribbon on
my backpack; at school people ask me what
the ribbon stands for. Writing this article is
also a way to reach out to help create aware-
give up; confidence in yourself is the most
Sometimes you might feel singled out, or
think that your friends do not understand.
Just remember: injured people should
never feel embarrassed because it is part
of who you are, and it is not the only thing
about you. Shine the light that is inside you
and let everyone see what you can achieve.
My brachial plexus injury is something
I will never regret having in my life because it is such a big part of it. I am proud
of who I am, and I would never want to
change any part of myself.
I have many memories from the hospital,
but once I was released I started making
special memories of my own. My parents
also came to terms with my bpi and overcame the fears and anger they felt at the
beginning.
ness about people with bpi.
This injury has given me the chance to
I recently reflected on an inspiring quota-
low me to do so much more. I believe that
tion. It opened my eyes and made me realize how my left arm can make a difference:
up talking to a family in the waiting room.
They had a beautiful baby girl, Bobbie “As you grow older, you will discover that you
Leigh. She was only 6-months-old, and she have two hands: one for helping yourself, the
had a Brachial Plexus Injury on her left
other for helping others.” —audrey hep-
arm just like me. Our families bonded with
burn
reach out to people’s hearts, and will almy left arm was a gift from God to touch
Outreach Magazine • SPRING 2012
lissa. She was my therapist until my middle
school years was an important person in
the hearts of His children.
About the author
Rachel is currently a sophomore at
North Brunswick Township High
School in New Jersey. She loves
mentoring teens and families who are new to
them right away, and we discussed ways to
help their daughter. They also helped me
I have realized that God has given me two
brachial plexus injuries and can be contacted
towards getting my Gold Award. I gave
hands: my right for helping myself and my
at rschroeder96@yahoo.com.
❝As you grow older, you will discover
that you have two hands: one for helping
yourself, the other for helping others.❞
Audrey Hepburn
15
networking
It all started with a post in the traumatic forums:
What do you
do with your arm
when you run?
Outreach Magazine • SPRING 2012
by Dan Aldrich
Asking that resulted in the manufacturing of 130 athletic arm slings for
people in 15 countries, talking weekly with injured people, sharing my
experience and becoming a ubpn board member. After spending 20 years
not knowing there was a bpi community it has been a lot of involvement
in a very short time.
I had just turned 18, about to graduate
snow skiing a few months later and was
reer, which was in financial services and
High School and head off to college with
back on a water-ski the weekend of the
getting active in the San Diego business
most of my goals revolving around play-
one-year anniversary of my accident.
community.
ing college golf and competing for the
I mention this for two reasons: One, in-
usa National Water Ski Racing Team.
stead of spending time dwelling on my
Part of that involvement was my desire
Those goals changed in May 11, 1986 at
arm, I spent my time living my life. Two, I
to give back and help others, so I got
about 11:05 am, I fell in a water ski race
was actively participating in athletic activ-
involved in multiple charitable activi-
going 100 mph and the resulting in-
ities, which meant I had to figure out how
ties. Someone asked me to speak to a
jury was a complete avulsion of C5-T1.
to get my arm “out of the way and secure.”
High School class on interviewing and
Fortunately for me, I sustained no other
16
resume writing since I had been hired
injuries. Within a month of my accident,
After many slings, straps, wraps and
by Dean Witter to be a financial advisor
I was playing golf again, three months
countless other contraptions, I finally
at 24-years-old when the average age of
later I was attending college and living
came up with something that worked
a new hire was 39. That talk turned into
in the dorms. Five months later I had
great and then used it for all my athlet-
a more of a “how to overcome challenges”
my intercostal surgery and was back in
ics for over the next twenty years. Along
with me using my injury as an example of
class six days after my surgery. I was
with my athletics, I was pursuing my ca-
a challenge I had overcome.
Since my first talk, I have spoken hun-
Dan finishing a triathlon wearing the sling
eran’s perspective.
dreds of times to thousands of people
With the sling idea in my mind and now
with the motivation, I went to a local
about overcoming life’s challenges, which
About a year later somebody asked, “what
company who had made me a few custom
leads me to how I found the ubpn com-
do you do with your arm when you run?”
water ski harnesses. I asked them if we
munity. In 2006, I was asked to write a
on the tbpi forum; after reading a num-
could do a custom sling, and the results
bio on myself and include an outline of
ber of posts I realized nothing existed to
have been amazing: it has been worn by
my speech, one problem, I forgot how to
help people get active again. I had a cus-
ParaTriathon National Champions, ultra-
spell my injury. So I typed something like
tom sling design in my mind but never
marathoners, extreme snow skiers, first
“brachiul plexis” into a search engine and
had the motivation to get it made; what
time walkers and everyone in between.
one of the top links was the ubpn website.
I used was still good, but I couldn’t share
I found the traumatic forums and started
how I made it with others because the
I have been so blessed to be an active
giving back by posting input from a vet-
parts I used were no longer manufactured.
member of this community over the last
Outreach Magazine • SPRING 2012
Dan water skiing
five years, and I am so happy to have been
part of helping us get active again. As I al-
❝With the sling idea in
my mind and now with
the motivation, I went
to a local company
who had made me a
few custom water
ski harnesses.❞
ways say, “Please, let me know if there is
anything I can do to help get you moving
forward and living your life to the fullest!”
About the author
Dan Aldrich is the Owner and
President of the Aldrich Wealth
Management Group and current
UBPN Board Member. He is active with the
Challenged Athletes Foundation and will be
competing in the 2012 World Open One Armed
Golf Championship at St Andrews. He is still
an active water skier; he just doesn’t race
anymore. You can call him at (818) 636-8109 or
e-mail him at dan@aldrichwealth.com.
17
tbpi experience
Do the Best You Can
With What You Have
by Keith Pancake
Outreach Magazine • SPRING 2012
the yellowed pages of my old Webster’s New World
Dictionary, is defined as physical or mental suffering caused by injury,
disease, anxiety or grief. However, this definition is unable to aptly
characterize the suffering that we can experience with a brachial plexus
injury. And by we, I am including the injured as well as those who can
feel pain because they care about someone who has this injury.
Pain, according to
I like to think that I have a unique per-
Immediately after my daughter’s birth, she
unanswered questions. We both became
spective regarding both physical pain and
was rushed into a dangerous surgery, my
frustrated by the riddles of this injury. My
the mental anguish that accompanies the
wife and I were in the grasps of the fear of
parents have told me that they would do
inability to control a situation, particu-
the unknown. We wanted nothing more
anything to take the pain away, just as my
larly when it is shrouded in obscurity. I
than to hold our little girl, safe and sound.
wife and I wanted to do for our daughter.
feel the indescribable nerve pain daily as
There was nothing we could do to ease her
In the end, we can’t take our loved ones
a result of my bpi.
suffering except to sooth her and sing to
suffering away, but we can continue to
her in the Neonatal Intensive Care Unit
soothe and support them. In return, it is
Three years ago I did not realize I had these
for three long weeks. We wanted to trade
up to the injured person to realize that it
nerves – just as eight years back I had never
places with her, take her pain and more, to
can be equally difficult for a loved one and
heard of Esophageal Artesia, which is what
do anything to comfort her. Alas, that was
that they to can experience pain.
my daughter was diagnosed with at birth.
not to be. On the bright side, today she is a
I mention her because both cases required
happy third grader and a big sister who has
Feeling powerless to help those we love
major surgeries and left our family facing
no doubt that her family loves her. I asked
or even understand what they are going
many frightening unknowns.
her recently if she was worried about either
through is painful indeed. Some folks,
of us, she said “no, because we are sur-
myself included, have felt that it is unfair.
rounded by many caring people.”
What did our sons and daughters, our
In both circumstances, we longed for
the suffering of our loved ones to cease.
18
husbands and wives, do to deserve this
These were uncertain times, but we are
Three years ago my wife and I were again
injury? Why aren’t there more answers?
blessed and have been able to move for-
faced with uncertainty and relentless pain
I struggled with these feelings for some
ward with life knowing how fortunate we
from a bpi. There are unlimited com-
time. The expenditure of time and energy
both are to be here.
plexities surrounding bpi and so many
coupled with the emotional distress was
devastating. Even worse, as the stress in
Around this time, my mother-in-law gave
that the past is behind us and fair or not,
my life increased, so did the pain. I could
me a couple of pages from her page-a-day
we’re moving on.
see my friends and family becoming anx-
calendar with two quotes:
ious and concerned the more I struggled.
❝❞
This has been a tremendous boon. Our
conversations are more meaningful and I
Just as my wife and I strained to come to
When we make the mistake of expecting life
am getting more relief. I have also realized
terms with our daughters situation, we
to be fair, we tend to spend a lot of time com-
how much those who care for me can suf-
again had to try to rationalize my injury.
plaining about what’s wrong with life.
fer as a result of this, and can adjust my
Trying to make sense of accidents or un-
actions accordingly to be more sensitive
foreseen suffering is incredibly difficult.
❝❞
This is only amplified with a bpi because of
One of the nice things about surrendering
strides towards recovery. It may not be
the constant pain and so many unknowns.
to the fact that life isn’t fair is that
fair, but in the end it doesn’t matter. Do
As I became more depressed and discour-
it keeps us from feeling sorry for ourselves
your best and look forward to the good
aged, I felt myself pushing away those who
by encouraging us to do the very
wanted to comfort me. My wife and I found
best we can with what we have.
to their needs. Together we are making
things in life with those you care about.
my bpi. She is a perennial optimist, and
Truer words have never been spoken.
For more information about Sail-
while all I could think about was, “What
I have been much happier ever since
inSolo, contact Keith at sailinso-
was I going to do? Is this as good as it gets?”
I surrendered.
lo@gmail.com or follow @sailin-
As a result of the injury I had my arm am-
Once I started looking forward and
Geography at Keene State, and he will be un-
putated and was fitted with a prosthetic.
stopped worrying about how equitable
dergoing surgery mid-2011 to further attempt
This definitely was not the life I envi-
life was, I was able to enjoy where I am
the management of his TBPI.
sioned and it wasn’t going to be easy, but
personally and appreciate those who care
it was better that not being alive at all,
about me more. We still worry about our
and it was my choice. I realized it wasn’t
daughter just as my family worries about
fair, and I was okay with that.
my situation, however, the realization
solo on Twitter. Keith is currently studying
Keith Helming the 12 Meter “Heritage”
Outreach Magazine • SPRING 2012
About the author
it hard at times to see eye-to-eye regarding
19
Fabric
Awareness Pin
$10.00
Jewelry
Awareness Pin
$5.00
Ribbon Car Magnet
$6.00
Preventing OBPI DVD
$11.00
Zipper Pulls
$1.50
order online at
Reaching out 4 BPI Bracelets
$5.00
tinyurl.com/ubpnstore
Outreach Magazine • SPRING 2012
please consider a donation
You can make a real difference in the lives of those coping with
turn this form, along with a check made payable to The United
a brachial plexus injury by making a tax-deductible donation.
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Donations support communication, education and support ser-
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20
StateZIP
Newborn Birth Injuries:
The Untold Story
This documentary is airing on many pbs
juries. ubpn produced a 25-minute compan-
stations. This five-minute documentary
ion documentary. They can both be watched
explains how bpi occurs and how they can
at tinyurl.com/bpispotlighton. The dvd is
be prevented. Learn from internationally-
available for purchase and includes both
renowned medical experts as they share
versions. ubpn is grateful to all who partici-
eye-opening information on the cause and
pated and donated their time and money.
prevention of obstetrical brachial plexus in-
Available at tinyurl.com/ubpnstore
CHANGE SERVICE REQUESTED
NON-PROFIT ORG
U.S. POSTAGE PAID
COLUMBUS, OH
PERMIT NO. 5405
32 William Road
Reading MA 01867
What is a Brachial Plexus Injury?
is the complex set of nerves that control muscles in
the fingers, hand, arm and shoulder. The nerves originate at the spinal cord
and are formed in three trunks located in the upper shoulder.
The Brachial Plexus
Terms used to describe a brachial plexus injury, bpi; include:
obstetrical brachial plexus injury , obpi
sustained during birth
traumatic brachial plexus injury , tbpi
sustained through an accident
burners and stingers
sports-related tbpi
facebook.com/theubpn
erbs palsy
upper-trunk injuries
klumpkes palsy
lower-trunk injuries
horners syndrome
when facial nerves are also affected
www.ubpn.org
twitter.com/ubpn
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