November, 2008 Edition

www.stlapda.org
November 2008: Vol. 22, Issue 4
Newsletter of the American Parkinson Disease Association, St. Louis Chapter
Mission
A Thanksgiving Message
Our mission is to enhance
the quality of life for people
with Parkinson’s disease, their
families, and caregivers in the
St. Louis area, and to provide
funding for ongoing Parkinson’s
disease research.
In This Issue
PD Awareness Walk in Carmi..... 2
Debbie Guyer
I want to share with you my memory of artwork that I observed for many months hanging in
the Farrell Learning and Teaching Center here at
Washington University School of Medicine that
has a special meaning to me. It consisted of two
top hats (tall, black cylindrical hats worn by men
in formal dress); one was mounted in the tradi-
The Year in Review.................... 2
APDA Center for Advanced
Research at Washington U........ 3
Living and Working with PD
Support Group.......................... 4
Medicare Part D........................ 5
As we conclude yet another year, especially
one which leaves so many people in economic
despair, we give thanks to those who have found
it within their means to share whatever their
wealth might be by contributing to the St. Louis
Chapter of the APDA. Whether the donation
in the tribute envelope was a one, five, ten, or
twenty dollar bill or perhaps a fifty, one hundred, or five hundred dollar check, it was always
appreciated and put to good use by our Chapter.
At this time of Thanksgiving celebration our
thoughts turn gratefully to you with warm appreciation. There is no time more fitting to say
PROSPERITY
Disease Modification................. 6
Anxiety in PD............................ 7
Support Group Calendars.........8–9
Delay the Disease.................... 10
Neuroprotective Clinical Trial... 10
Lucky 13................................. 11
Tributes & Donations............... 12
Mark Twain Area PD Support
Group Runs in Hull, IL............ 15
Save the Dates........................ 16
NEWSLETTER DISCLAIMER
“The information and reference
material contained herein concerning research being done in the field
of Parkinson’s disease and answers to
readers’ questions are solely for the
information of the reader. It should
not be used for treatment purposes,
rather for discussion with the patient’s own physician.”
The printing and distribution of
this newsletter was supported by
an unrestricted educational grant
provided by
tional position with the brim at the bottom…the
other, inverted, so that the brim was at the top.
The title of this exhibit was quite simple: PROSPERITY. I think perhaps the most interesting
thing about this is that PROSPERITY applies
to both of the hats. For the person wearing the
hat in the traditional manner, we think of affluence, someone who has had good fortune,
flourished, and yet the artist must also be suggesting that PROSPERITY also applies to the
individual with the hat turned the other direction, ready to accept donations. It is because
of those who flourish and choose to give it to
others, that those in need become the recipients
of their good fortune.
Thank You and to wish you a Happy Holiday
Season and a New Year of health, happiness and
prosperity. n
APDA Information & Referral Center
Deborah Dalin Guyer, M.A., CCC-SLP, Coordinator
guyerd@neuro.wustl.edu
Brandi Koziatek, M.S., Special Projects Assistant
koziatekb@neuro.wustl.edu
Campus Box 8111 • 660 S. Euclid
St. Louis, MO 63110
314-362-3299 • 314-747-1601 (fax)
Office Hours:
Monday-Friday 7:30 AM–4:00 PM
www.stlapda.org
BOARD OF DIRECTORS
Matt LaMartina, President
Thomas Mackowiak, 1st Vice President
Don Carlson, 2nd Vice President
Joseph Burcke, 3rd Vice President
Brian Hantsbarger, Treasurer
Rebecca Normand, Secretary
BOARD MEMBERS
Bill Billings
Bob Clay
Brook Dubman
Jean Emory (in memoriam)
Carol Feuerhahn
Bernard Frank
Bob Goldsticker
Elaine Lindecke
Joseph Marchbein
Dorothy Reimers
Robert Sanderson
Jack Strosnider
Addie Tompkins
Lynda Wiens
Stan Wilensky
DIRECTOR EMERITUS
Susan B. Levin
EXECUTIVE DIRECTOR
The Year
in
Review
Matt LaMartina, APDA Board President
As I sit
back and reflect on the
year and everything we
have accomplished at
the St. Louis
Chapter of the APDA, I can’t help but
say WOW! In a year that has been
plagued with economic and financial
uncertainty, we stayed focused on our
mission, to Ease The Burden and to
Find The Cure, and completed one of
the most successful years in our Chapter’s 25 year history.
Through the single handed effort
of our Chapter Coordinator, Debbie
Guyer, we opened our Satellite Resource Center in Chesterfield. Debbie’s vision, a very generous donation
from Louis Sachs and a gift from one
of our most dedicated supporters,
Lynda Wiens, created this fantastic
space which serves as a resource center
to educate the PD community about
the disease and our services at the St.
Louis APDA. In addition, we added
several new programs and classes including aquatic exercise (to improve
walking and balance) and LOUD
CROWD (to help improve communication success), and a new support
group Living Well and Working with
PD. We also implemented a new
shared cost program for respite care
and completely eliminated the waiting list for in home respite care and
adult day care.
Our two major fundraisers had banner years as well. The continued success of our golf tournament and fashion show enabled us to expand patient
services and fund additional research
at the Center for Advanced PD Research. Moreover, we applied for and
were awarded unrestricted educational
grants which enable us to continue to
provide wonderful educational programs and our quarterly newsletter
without taking away monies donated
to the St. Louis Chapter.
I can’t thank our Board enough for
all their hard work and dedication to
this cause. And to you, the PD community who continues to support our
fundraisers and donate to our Chapter, I thank you. n
Deborah Dalin Guyer, M.A., CCC-SLP
MEDICAL ADVISORS
Kevin Black, MD
Terri Hosto, MSW, LCSW
William Landau, MD
Joel S. Perlmutter, MD
Brad Racette, MD
Sylvan Sandler, PD, FACA
Samer Tabbal, MD
Lee Tempel, MD
NATIONAL AFFILIATION
APDA • 135 Parkinson Ave.
Staten Island, NY 10305
(800) 223-2732
American Parkinson Disease Association
2
St. Louis APDA LiNK
They Walked to Stomp Out Parkinson’s
The sun shined brightly on the first
annual Parkinson’s Disease Awareness and Fundraising Walk held on
Saturday, September 6, at the First
Christian Church in Carmi, IL. In
fact, “the weather was perfect” said
Carolyn Chastain, organizer, and she
was extremely pleased that the goal of
$3,000 was exceeded.
The walk netted $3,631, which
was donated to the St. Louis American Parkinson’s Disease Association at
the Washington University School of
Medicine. The APDA motto is “To
ease the burden, to find the cure”, and
the money collected will help fund research in the cause and cure of PD.
To “help stomp out Parkinson’s
Disease one step at a time”, 10 teams
and 50 individuals walked the .1 mile
course in the church parking lot. Most
walked 10 laps, or one mile; however,
one individual’s 17 team members
each walked five miles.
A health fair was held in conjunction with the walk. A cakewalk during
the events also brought in additional
funds. Clowns helped entertain the
crowd and cheered for the walkers.
“The support group has been in existence for seven years, and I thought
it was time to do some fundraising,
and this was the only way I knew
how,” said Chastain, leader. There
are 20-25 members of the Carmi, IL
support group. n
November 2008
Progress
in
PD Research 2008
Joel S. Perlmutter, MD
I am delighted to describe the progress
in research and clinical activities made at
the APDA Center for Advanced PD Research. The teamwork of our
Center at Washington University with the Greater St. Louis
Chapter of the APDA and the
APDA Information & Referral Center (I&R) coordinated
by Debbie Guyer have made
this progress possible.
We continue to make substantial progress in understanding various aspects of deep brain stimulation
(DBS). Dr. Tabbal led a group that
recently published a study demonstrating that DBS on one side of the brain
reduces stiffness and slowness not only
on the other side of the body but also
on the same side. This surprising result helps us gain further understanding about brain pathways that control
movement. Previously, Dr. Hershey had
demonstrated that DBS in people with
PD may impair critical thinking despite
the reduction of tremor, slowness and
stiffness. Now, Drs. Meghan Campbell,
Morvarid Karimi, and Tamara Hershey
have discovered what happens in the
brain during these changes in thinking.
They have published that changes in a
memory task related to alterations in
function in a specific part of the brain
called the DLPFC, which is an area in
the front of the brain whereas changes of
another type of critical thinking responsible for controlling oneself from doing an unwanted action correlates with
changes in a different part of the frontal
lobe. Dr. Karimi led a team that found
that DBS-induced changes in stiffness and slowness also correlated with
changes in function of specific brain regions. Both of these recently published
studies open the way to prove how DBS
aimed at different parts of small brain
structures like the subthalamic nucleus
affect thinking or motor control. The
ultimate goal of this line of research is
to find more effective, easier and safer
methods for providing clinical benefit
November 2008
from DBS. Dr. Gammon Earhart also
studied DBS of a different part of the
brain called the thalamus. Thalamic
DBS is frequently used to
control tremor but Dr. Earhart has now found that in
some cases this type of stimulation may impair walking
or balance and future studies
may focus on whether DBS of
specific parts of the thalamus
influence whether there is
improved or impaired balance. Finally,
Drs. Karimi and Videen together with
some of our students have finely tuned
a new method to very precisely locate
sites of DBS electrodes in the brain.
This important advance will help all of
our other DBS research. Support from
the Chapter started these investigations
and have helped us to pursue new ideas.
This has been the critical step to obtaining additional support from the National Institutes of Health (NIH). In fact,
Dr. Hershey, in collaboration with Dr.
Kevin Black, has just received a major
new grant to support further studies of
DBS effects on thinking and mood.
Dr. Earhart continues to investigate
new strategies using the rotating treadmill to treat turning problems and freezing, the sudden cessation of movement.
In fact, she and her graduate student
published a preliminary study demonstrating that the rotating treadmill has
potential to reduce freezing. Freezing
is the abrupt stopping of walking while
turning, going through doorways or
when first starting to walk. This study
needs confirmation in a larger group
but is a promising first step for treatment of this difficult area. As many also
know, Dr. Earhart and another graduate
student Madeleine Hackney have now
demonstrated that Tai Chi and tango
dancing improve walking in people
with PD. Another graduate student,
Mike Falvo, will be investigating the effects of strengthening exercises in PD.
All of these studies have been made possible due to the generous support of the
Chapter. In this way, the Chapter has
helped “capture” these new PD investigators.
Dr. Racette and his team with Drs.
Criswell, Willis-Wright, Evanoff and
Checkoway have continued to make
substantial progress in their research trying to determine whether environmental
factors contribute to the development
of PD. They are continuing studies of
whether welding exposure, manganese
toxicity or pesticide exposure increases
risk of parkinsonism. The Chapter has
continued to support several of the preliminary parts of this research and Dr.
Racette also has an NIH grant supporting part of this work.
We continue to participate in several
large studies to identify genetic factors
that may contribute to development of
PD. In the past two years, we have collected 1000 blood samples from people
with PD, family members of those with
more than one person affected in the
family and from people without PD.
All of the members of our group including Drs. Racette, Tabbal, Kotzbauer,
Criswell, Karimi, Willis-Wright, and
Torres have contributed to this study as
have many of the people that come to
the Movement Disorders Center. We
have published 5 more papers this past
year in collaboration with other centers
around the country on these studies.
Much of this work was originally started
with the help of the Chapter and now
we have collaborated with researchers to
obtain NIH funding through a major
center grant with Dr. David Holtzman,
head of the Department of Neurology.
Drs. Goate, Watson and Nagarajan are
other collaborators on these studies. Of
course, these studies would not be possible without the help of Laura Carpenter and Johanna Hartlein.
We continue our research on a new
class of drugs with the potential to slow
progression of PD. Our initial findings
indicate that the drug is well tolerated
with minimal side effects but we still
need to collect more data to determine
continued on page 4
St. Louis APDA LiNK
3
PD Research Update
continued from page 3
whether this will be effective. Initial
support from the Chapter made possible subsequent funding from NIH.
We are now in the third year of our
study funded by the Chapter to investigate the relationship of dementia
with PD. People with PD have an increased risk of developing problems with
memory and concentration – like those
problems that occur with Alzheimer’s
disease. In fact, people with PD have an
increased risk of developing Alzheimer’s
or other types of dementia. The only
current method to identify the specific
cause of dementia in people with PD is
to examine the brain after someone has
died. The purpose of this study is to determine whether a new type of PET scan
can help diagnosis the cause of dementia
in people with PD during life. We scan
people with PD that do and do not have
evidence of dementia. At this point, we
have collected scans from more than
45 people and continue to make good
progress in this area. In fact, we had
two presentations at the International
Society of Movement Disorders this
Living
and
Working
The new “Living and Working with
Parkinson’s Disease” (Young Onset)
support group got underway with their
first meeting which was held on October 16th at the Windsor Crossing Community Church in Chesterfield. It was
a great opportunity to get to know each
other and discuss potential topics for
future meetings. This support group
will meet on the 3rd Thursday of each
month from 6:30 – 8:00 PM at 114
Eatherton Road (Windsor Crossing
Community Church).
This support group will provide a forum to discuss and explore topics that
may be of particular interest to persons
with Parkinson’s who are still in the
workplace. In addition to providing
the opportunity to connect socially with
other PD patients, time will be devoted
4
past summer describing our preliminary
findings. This critical study hopefully
will help us to eventually identify groups
of people for testing new treatments of
dementia in PD. The key contributors
to this study include Johanna Hartlein,
Tamara Hershey, Erin Foster, Meghan
Campbell, Nigel Cairns and Michelle
Burack. Michelle helped start this study
and continues to work with us despite
having moved to Rochester, New York.
Dr. Nigel Cairns continues to help expand our brain bank. Brain examination
remains the only way to confirm a specific
diagnosis of PD or related diseases. It is
a critical component of our research on
dementia in PD. Brain donation is an
incredibly valuable gift and has led to a
number of advances in our understanding of the causes of parkinsonism. This
project also has been supported by the
Chapter.
In summary, we have made substantial
progress on many fronts in our research
into the causes, mechanisms and treatments for PD. Much of this work has
been supported by the Greater St. Louis
St. Louis APDA LiNK
with
Chapter of the APDA both financially
and by helping to recruit participants
for our studies. Without volunteers, we
would have no research and would make
no progress. These efforts are a true collaboration of “town and gown” – the
Chapter, the community and investigators at Washington University and other
universities.
A key part of our success is due to
leadership of two people – Debbie
Guyer who coordinates our APDA Information & Referral Center and Matt
LaMartina, Chapter President. These
two people with their team of the Board
of Directors and other volunteers not
only bring important patient and family
services to our community but also help
garner support for our studies. Each
volunteer makes an important contribution to these efforts. This kind of support has helped us to become the best
Chapter in the country. We appreciate
all of these efforts. n
PD Support Group
each month to host a professional who
will address the needs of the group by
presenting information about their industry and/or their skills and products,
employment security, financial planning, human resources, and insurance
(just some of the planned topics). It is
likely that several members may have
early-onset Parkinson’s; however, it is
not an early-onset group exclusively.
Anyone is welcome to attend and participate in these meetings.
Meetings will be both educational and
social. In addition to the monthly hosted speaker, time will be set aside at each
meeting for socializing, sharing, and
welcoming newcomers. Caregivers are
also welcome to attend the meetings. It
is hoped that they will find value in the
topics discussed - and the relationships
which will form. As with any new organization, it is
expected that the group will learn and
grow and adapt as necessary over time.
Facilitators have format and initial topics in mind, however it is felt that the
“group” part of a support group is most
important and facilitators will be seeking input from it’s members for ideas on
future topics and speakers. The goal is
to continually look at the needs, concerns, and questions of the members,
and then work to address those items. If you have any questions about the
group or the meetings, please contact
Jeff Wilsey at 314-614-4560 or by email
at wilsey_jeff@yahoo.com. n
November 2008
Medicare Part D Open Enrollment: Information
Current Recipients and New Enrollees
for
Stacey K. Barton, MSW, LCSW
Movement Disorders Center, Department of Neurology
Washington University School of Medicine
It is no secret that the cost of prescription medications takes up a significant
portion of our budget, particularly for
someone with a chronic illness such as
Parkinson’s Disease. Medicare Part D
was enacted to provide relief to Medicare recipients by assisting with the cost
of prescriptions. With over 40 different
Part D plans to choose from in 2009,
many people find the program confusing and thus don’t take full benefit of the
prescription drug coverage provided under Medicare. It is important that beneficiaries reconsider their Part D provider
every year, even if you are satisfied with
your current coverage. Also, for those
having difficulty affording their premiums, deductibles and copayments, there
is a Social Security program that may
benefit you.
Medicare Part D covers brand-name
and generic prescription drugs at participating retail and mail order pharmacies.
Participation in Part D is open to everyone with Medicare, regardless of income,
resources or health status. Medicare recipients can enroll in Part D when they
first become eligible for Medicare and
should consider this, because failure to
sign up (unless you can prove coverage
that is equivalent or better) may result in
a penalty of 1% for each month a person
failed to enroll. For those who didn’t sign
up when first eligible, subsequent opportunities are generally during each annual
open enrollment, which is November 15
to December 31. This article will only
discuss coverage through traditional
Medicare and not those who are enrolled
in a Medicare Advantage Plan (“Medicare HMO”).
Medicare D operates like other insurance policies in that it includes a monthly
premium, yearly deductible and copayments. These costs vary by plan. Costs
can change each year, as can the prescripNovember 2008
tions covered, and costs are expected to
increase significantly in 2009. The most
popular Medicare Part D plan will see
its premiums increase 15% next year
and other plans will increase over 50%.
Also, it is possible your prescriptions
have changed over the course of the year.
Because of this, assessing the plan you
have chosen should become an annual
activity. For those with limited income
and resources, the “Extra Help” program
through Social Security may mean that
you do not have to pay a premium or
deductible.
A lot of things can change over the
course of the year. Many people do not
realize that the medications covered under each drug plan’s formulary can change
throughout the year, but you can typically only change providers once a year.
Your medications may have changed,
or the pharmacies that accept your plan
may be different. Maybe your financial
situation is not the same.
Where to begin:
First, Medicare participants should visit www.medicare.gov and select “Compare Medicare Prescription Drug Plans”.
Next, select “Find and Compare Plans”
and begin your search. Enter your medications into the site for a personalized
plan.
For a sample patient, I entered someone taking two Parkinson’s medications
and drugs for depression, hypothyroidism and high cholesterol. Searching using the Medicare website, I was given the
choice of comparing 43 different plans.
You can then sort by annual cost, pharmacy, premium, deductible and other
variables. There was a variance of over
$2500 a year between the plans and great
variability of coverage including coverage
of generic medications in the coverage
gap. You can see that it pays to be an
informed consumer!
Helpful Resources
The Medicare Prescription Drug
Coverage website: http://
www.medicare.gov/pdphome.asp
1-800-MEDICARE (1-800-633-4227)
Area Agency on Aging (AAA) (can provide
volunteers to assist in the process).
To locate your local AAA, contact the
Eldercare Locator at 1-800-677-1116
or go to www.eldercare.gov/Eldercare/
Public/Home.asp. You may also contact Stacey Barton at the Movement
Disorders Center at 314-362-3471 for
additional information or assistance.
Social Security Extra Help:
https://secure.ssa.gov/apps6z/i1020/
main.html
For Medicare recipients who have limited resources, there is help from Social
Security’s “Extra Help” program. Limited resources are defined in 2008 as savings, investments, and real estate are not
worth more than $23,970 (married and
living together) or $11,990 (single or not
living with spouse). The home you live
in, vehicles, personal possessions, burial
plots or irrevocable burial contracts are
not counted. Even if you are not certain
you will qualify, it is worth applying.
Applying for Extra Help is simple and
takes less than 10 minutes when done
online. Visit https://secure.ssa.gov/
apps6z/i1020/main.html and follow
the instructions. If you qualify, it could
save you up to $3,600 a year!
These are difficult economic times,
but there are things you as an informed
consumer can do to maximize your government benefits and limit your out of
pocket costs. There are resources available to help you (see sidebar) navigate
the maze and come out with the best
plan for you. n
St. Louis APDA LiNK
5
Disease Modification
and
Adagio
Lee W. Tempel, MD
Patients and physicians are both increasingly interested in something that
could slow down (or ultimately stop)
the progression of PD. This has been a
very elusive goal. There is currently still
no medication proven to do that. Furthermore, trying to find a way to prove
disease modification has, in itself, been a
very difficult task. Ultimately, we would
like to achieve neuroprotection. That is,
we would like to find medication which
would prevent continued loss of brain
cells that make dopamine (and other
brain cells that are being lost in PD). It
is worth remembering that an estimated
60 to 80% of dopamine producing cells
have already been lost when a patient
first begins to show symptoms of PD.
Ideally, we would like to identify patients
that are destined to have such dopamine
cell loss and intervene before it occurs.
Next best would be to identify patients
who have started to have cell loss but do
not yet have any
symptoms.
Both of these levels of intervention are
a long way off. All of the current attempts at approaching this problem are
at the level of looking at patients who
already have started to have symptoms
(i.e. already have 60 to 80% dopamine
cell loss) and trying to slow down (not
even hoping to stop) any additional cell
loss. The idea, though, would be that
if we could do that, we might hope to
keep a patient at very early stages of
6
St. Louis APDA LiNK
symptoms much longer and possibly for
the rest of their lifetime. Keeping them
at early stages would allow us to much
more easily and effectively
keep their symptoms under
control. “Neuroprotection”
implies that we know that we
are preventing cell loss at the
cellular level. “Disease modification” is different in that
we are looking at symptom
and sign progression (usually
comparing two groups since we have no
way of knowing how a single individual
would progress). What we really are doing is attempting to show disease modification.
To absolutely show neuroprotection
we would have to have two matched
groups and prospectively do one single
intervention and somehow keep the
two groups otherwise matched as they
progressed through PD (treat them otherwise the same way) and then look at
brain cell counts at
the time of death.
That would be a
very long and extremely costly study
and, from a practical point, there is
no way that study
can ever happen.
Short of that, researchers have tried
to assess “surrogate
markers” of dopamine brain cell loss
by devising studies that look at the
amount of dopamine production that a
patient can still do on their own as PD
progresses and assuming that decreased
dopamine production proportionately
reflects dopamine cell loss. Those studies have been done by attempting to “label” dopamine or dopamine cells in the
brain using tracers that then show up on
SPECT or PET imaging studies. There
are a lot of technical difficulties in labeling, imaging and interpreting those
studies that make the assumption that
we are actually looking at dopamine
cell loss much less than certain. To emphasize that point, there have
been a few large studies using
those techniques and studying
dopamine agonists (ropinirole [Requip] and pramipexole [Mirapex]) that showed
slowed progression on imaging
but meanwhile the patients
were still obviously clinically
progressing.
But studying disease modification is
very difficult as well. One thought has
been to look at two groups in terms of
reaching certain “milestones” of their
PD such as needing to use a walker, becoming nonambulatory, nursing home
placement or death. Obviously, other
things besides PD (or in conjunction
with PD) may enter into the picture
that would determine that some patients reach clinical milestones sooner
than others. Furthermore, doing a prospective trial with these types of milestones as endpoints would again take a
very long time and cost a lot of money.
By far the most common way to look
at disease modification so far has been to
look at two groups of early PD patients
who do not yet require usual symptomatic treatment and try some medication that may slow PD progression that
would then allow the group taking the
medication to not need to start usual
symptomatic medication for a significantly longer time. The idea seems simple but there are many potential pitfalls.
The medications or their metabolites
(what they get changed into as they are
degraded) may have some symptomatic
benefit as well. Then whether you are
looking at disease modification or simply a low level of symptomatic benefit
becomes unclear. This was the case (in
large part) with selegiline. Other possible disease modifiers may not have a
known symptomatic benefit but in these
studies (which again need to involve a
lot of patients and are very costly) have
continued on page 14
November 2008
Anxiety
in
Parkinson Disease
Kevin J. Black, MD
The upcoming holidays can be joyous …
or stressful. In fact, stress can be a big part
of PD year-round. We asked Dr. Kevin J.
Black to comment and here is his reply.
Anxiety is hard to define clearly, but
everyone has experienced it. Anxiety is
complex and affects thinking, emotions,
and the body. Cognitive or thinking
symptoms include worrying, phobias,
and thinking that something bad will
happen. Emotional symptoms include
fear, dread, apprehension, and feeling “on
edge.” Physical symptoms include sweaty
palms, wide eyes, altered bowel habits,
and an exaggerated startle response.
Anxiety, when it works right, is an important part of normal life. In dangerous
surroundings, it makes us aware of the
environment and ready to run or fight.
It can give a musician or actor an “edge”
that improves a stage performance. Unfortunately, as we all know, anxiety often
causes problems. This can range from
mild embarrassment that interferes with
a presentation at work, to physical symptoms that send people on repeated fruitless doctor visits to find a heart or stomach disease that’s not there, to disabling
fears that confine someone to his house.
Anxiety can lead to unnecessary laboratory studies, medication, or surgery.
A special problem with anxiety in PD
is that PD symptoms like tremor and
impaired speech always get worse with
anxiety, leading friends and relatives to
think that the PD patient is “just nervous.” That’s not true. You can give rats
parkinsonism and when you make them
nervous their movements get worse too.
It doesn’t mean they don’t have a neurological disease. But there could be two
problems, PD and anxiety.
Clinical anxiety is very common in
Parkinson’s disease. From a third to a
half of PD patients have serious anxiety,
whether you define it as an abnormally
high score on a symptom checklist or as
an anxiety disorder diagnosis from a research psychiatrist. A careful study at the
Mayo Clinic showed that PD patients
were more than twice as likely to have an
November 2008
anxiety disorder as healthy comparison
subjects of similar age.
Obviously PD patients can have the
same anxiety problems as anyone
else, and having serious physical illness can certainly make us
worry. Still, there is strong evidence that the illness itself causes
some of the symptoms. The best
evidence is that PD patients have
more anxiety than healthy people even if you only count anxiety symptoms that started 5, 10, or even
20 years before the PD diagnosis.
Anxiety can come from many different
causes, and the prognosis (outlook) and
treatment are different depending on the
cause. Here are some of the most common causes of anxiety in PD:
1. Mild anxiety that doesn’t happen
that often and doesn’t interfere with
your life is not a disease, but rather
a normal part of life.
2. The most common cause of clinical anxiety in PD is major depression. Over 90% of people with
major depression have anxiety. Major depression is diagnosed when
someone is sad or disinterested in
things most of the day, most days,
for weeks on end, and has several
other typical symptoms. The good
news is, this is very treatable. Most
people respond to antidepressant
medicine and/or certain kinds of
talk therapy. There are other treatment options if these don’t work
within about 6 weeks.
3. People with PD may have a distressing, uncomfortable, anxious
feeling that is worst when sitting or
lying and that is much, much better when standing or pacing. Doctors use a fancy Greek name for
this: akathisia (ack uh THIZZ ee
uh). This is a symptom of PD and
usually improves with adequate
anti-PD treatment.
4. In more advanced PD, patients can
have “off-period anxiety.” Typically these patients have panic and
physical symptoms of anxiety that
develop predictably when a dose of
their anti-PD medicine is wearing
off or has not yet kicked in.
We looked through records
of over a thousand PD patients seen here, and about
5% had this condition severely enough that their
doctors noticed it. This can
be improved by increasing
or evening out the PD medication doses. However, these same
patients are very prone to develop
treatment side effects such as dyskinesias or hallucinations, so doctors
and patients have to watch for these
possible complications.
5. Social phobia means, “A marked
and persistent fear of one or more
social or performance situations …
the individual fears that he or she
will act in a way (or show anxiety
symptoms) that will be humiliating or embarrassing.” To make a
diagnosis, there are several other
conditions that must be met. Social phobia occurs very commonly
in PD patients, but it predates the
movement problem. In one study,
it was about 67% more common in
PD than in people with a different
movement disorder, and in every
case the social phobia had started by
age 20. Usually these patients were
shy as a child. There are some very
strong clues, even in people without
PD, that social phobia is associated
with low dopamine function in the
brain. Fortunately, social phobia is
very treatable.
6. Panic attacks are common in PD.
Panic attacks are defined as a short
(about 5-20 minutes) period of intense fear or discomfort with several
other anxiety symptoms. These can
include palpitations, shortness of
breath, sweating, nausea, dizziness,
a fear of dying, or a sense that you
are not real or not really connected to things around you. In some
continued on page 15
St. Louis APDA LiNK
7
Missouri Support Group Calendar
Sponsored by the St. Louis American Parkinson Disease Association
Our Support Groups meet once a month or as noted. Support Group day and time may change periodically. For current updates on support groups and exercise classes, call the APDA Information & Referral Center or the facilitator.
City
County
Meeting Site
Day of Meeting
Time
Cape Girardeau
Cape Girardeau
St. Francis Med. Ctr.
211 St. Francis Dr.
SFMC Cafeteria
4th Monday
06:30 PM
Columbia
Boone
Lenoir Community Center
1 Hourigan Drive
1st Thursday
04:00 PM
Gerry Neely, RN
573-815-3554
Creve Coeur
St. Louis
Shaare Emeth Congregation
11645 Ladue Rd., Library
1st Wednesday
02:30 PM
Lisa Ackerman
314-725-1888
Festus/Crystal City
Jefferson
Disability Resource Association
420 B S. Truman Blvd.
3rd Tuesday
01:00 PM
Nancy Pope
636-931-7696
Florissant
St. Louis
Garden Villas North
4505 Parker Rd.
4th Thursday
11:00 AM
Julie Berthold
Kim Liefer
314-355-6100
Hannibal
Marion
APEX Rehabilitation Center
115 N. 3rd
1st Tuesday
01:00 PM
Marilyn White
217-242-6339
Jefferson City
Cole
Capital Regional Medical Center
SW Campus, Cafeteria
3rd Wednesday
03:00 PM
Jennifer Urich, PT
573-632-5440
Joplin
Jasper
St. Johns Regional Medical Ctr.
2727 McClelland
Mondays
01:30 PM
Nancy Dunaway
417-659-6694
Kirkwood
St. Louis
Kirkwood United Methodist
201 W. Adams
1st Monday
07:00 PM
Terri Hosto, MSW,
LCSW
314-286-2418
Kirkwood/Oakland
St. Louis
Bethesda Dillworth
9645 Big Bend
3rd Friday
10:00 AM
Stacy Pepper, BSW
314-446-2184
Ladue
St. Louis
The Gatesworth
1 McKnight Place
2nd Wednesday
01:00 PM
Lake Ozark
Camden
Lake Ozark Christian Church
1560 Bagnell Dam Blvd.
3rd Thursday
05:30 PM
Patsy Dalton
573-964-6534
Rolla
Phelps
Rolla Apartments
1101 McCutchen
4th Thursday
01:30 PM
Carolyn Tilford
573-458-7695
Sedalia
Pettis
First Christian Church
(Disciples of Christ)
200 South Limit
3rd Monday
04:00 PM
Barbara Schulz
660-826-6039
South St. Louis
St. Louis
Garden Villas South
13457 Tesson Ferry Rd.
2nd Wednesday
10:00 AM
Jack Strosnider
314-846-5919
St. Peters
St. Charles
1st Baptist Church of Harvester
4075 Hwy. 94 S.
1st Tuesday
01:00 PM
Ann Ritter, RN
636-926-3722
Ste. Genevieve
Ste. Genevieve
Riverview at the Park
21997 White Sands Rd.
Dining Room
2nd Wednesday
10:00 AM
Jean Grifford
573-543-2162
St. Louis
St. Louis
DBS Patients
Sunrise on Clayton Sr. Living
7920 Clayton Rd.
3rd Thursday
01:00 PM
Stan Wilensky
314-997-5114
Chesterfield
St. Louis
Newly Diagnosed
APDA Satellite Resource Center
1415 Elbridge Payne, Suite 168
1st Tuesday
10:30 AM
Carol Feuerhahn
314-863-4725
St. Louis
Young Onset
Living and Working With PD
Windsor Crossing Community Church
114 N. Eatherton Rd.
3rd Thursday
06:30 PM
Jeff Wilsey
314-614-4560
Chesterfield
8
St. Louis APDA LiNK
Leader
Phone
Desma Reno, RN, MSN 573-331-5871
Maureen Neusel, BSW 314-372-2369
November 2008
Illinois Support Group Calendar
Sponsored by the St. Louis American Parkinson Disease Association
Our Support Groups meet once a month or as noted. Support Group day and time may change periodically.
For current updates on support groups and exercise classes, call the APDA Information & Referral Center or the facilitator.
City
County
Meeting Site
Day of Meeting
Time
Leader
Phone
Alton
Madison
Eunice C. Smith Home
1251 College
Downstairs Conference Room
1st Monday
02:00 PM
Cheryl Paradine
618-463-7334
Belleville
St. Clair
Southwestern Illinois College (PSOP)
201 N. Church St., Rm 106
2nd Monday
01:30 PM
Mary Frierdich
& Jodi Gardner
618-234-4410
x 7031 or
x7033
Breese/Carlyle
Clinton
St. Joseph Hospital
9515 Holy Cross Ln.
2nd Monday
07:00 PM
Carol, Jessi, or Jim
Loepker
618-594-3780
Carmi
White
First Christian Church
504 Bohlever Dr.
3rd Tuesday
01:00 PM
Carolyn Chastain
618-382-4932
Carbondale
Jackson
Southern IL Healthcare Headquarters
University Mall
1st Wednesday
01:00 PM
Bob & Charlotte
Kiriakos
618-549-3360
Decatur
Macon
St. Paul’s Lutheran Church
352 W. Wood St.
3rd Thursday
01:30 PM
Cathy Watts
217-428-7716
Granite City
Madison
St. Johns United Church of Christ
2901 Nameoki
1st Thursday
01:30 PM
Hilda Few
618-797-0527
Greenville
Bond
Greenville Regional Hospital
200 Healthcare Dr.
Edu. Dept., Edu. Classroom
2nd Monday
01:00 PM
Lisa Ketchem, RN
618-664-0808
ext. 3555
Matoon
Coles
Sarah Busch Hospital
500 Health Center Dr.
Last Tuesday
01:00 PM
Kay McDade
217-258-4040
Mt. Vernon
Jefferson
Greentree of Mt. Vernon
2nd Floor
4th Thursday
06:30 PM
Quincy
Adams
Fellowship Hall of Salem
Evangelical Church of Christ
9th & State
3rd Thursday
12:00 PM
Barb Robertson
217-228-9318
Springfield
Sangamon
Christ the King Parish Ctr.
1930 Brentwood Dr.
Nov. 16th
02:00 PM
Dan Vonberg
217-546-2125
Donna & Bill Peacock 618-242-4492
Exercise Classes
Our Exercise Classes meet once a week or otherwise noted.
City
County
Meeting Site
Day of Meeting
Time
Leader
Phone
Clayton
St. Louis
Barnes Extended Care
401 Corporate Park Dr.
Wednesday
& Friday
01:30 PM
Sue Tucker, OT
314-289-4325
Chesterfield
St. Louis
St. John’s Mercy Rehabilitation Hospital
14561 N. Outer 40
Tuesday
01:00 PM
Deb Luetkemeyer, PT
314-881-4200
South St. Louis
County
St. Louis
Garden Villas South
13457 Tesson Ferry Rd.
Monday
11:30 AM
Sue Tucker, OT
314-289-4325
St. Peters
St. Charles
Barnes-Jewish St. Peters Hospital
Ste. 117
Every Tuesday
except 1st Tuesday
11:00 AM
Holly Leigh, PT
636-916-9650
North St. Louis
County
St. Louis
Garden Villas North
4505 Parker Rd.
TBA
TBA
Julie Berthold
Kim Liefer
314-355-6100
November 2008
St. Louis APDA LiNK
9
Delay the Disease –
Functional Fitness
David Zid
This is the first in a series of functional fitness plans for people with Parkinson’s disease.
Each set of exercises is designed to assist you with a particular task or activity of daily
living that may be difficult for you. Perform all exercises in the set at least 3 to 4 times
a week. Make each exercise challenging by either increasing the repetitions or adding
weight to the exercise. I promise this agenda will help you remain independent longer.
Good Luck
~David
Fitness Plan – Getting out of Bed
Side Push Up – Lie on your side on your elbow, legs straight
and feet stacked. Place other hand on floor in a comfortable
position. Perform a “push up” lowering your chest to the floor
and back up from this side lying position. Perform 5 – 10
reps. Change sides and repeat.
Straight Leg Raise – In a seated position, straighten one leg
in front of you, the other leg flexed at the knee with feet on
the floor. Lift straight leg off of the floor as high as you can,
keeping the knee as straight as possible. Perform 5 – 10 reps.
If this is easy, try using both legs at once.
Roll Up – Lie flat on back with hands over the head, legs.
Starting with your head and neck, slowly roll up bringing one
vertebrae off the floor until you are in a seated position. Slowly roll back down to the floor. Perform 5 – 10 reps.
Side to Side Two Leg Lift – In a seated position with feet flat
on the floor, using both hands to hold on to the sides of the
chair, pick up both knees and swing them to the left side of
the chair. Then pick up knees and swing to the right side of
chair. Perform 5 – 10 reps.
Functional Abs – Side to Side – Lie on back on floor, with a
ball, cushion or pillow between your knees, feet off the floor.
Move knees side to side, going towards the floor to tolerance.
Perform 5 – 10 reps.
Seated Stretch – Sit on the floor, with your hips close to the
wall. Push your head and shoulders into the wall; push your
legs into the floor. Relax your hands in your lap, toes pointed
toward the ceiling. Hold for 2 minutes, relax and breathe.
For additional exercise ideas, refer to our book and DVD Delay the Disease – Exercise and Parkinson’s Disease, which is
available at the APDA Information & Referral Center and satellite resource center. n
Neuroprotective Clinical Trial
Brad Racette, MD
Principal Investigator
A major goal of the neuroscience
community is to develop treatments
that will slow or forestall the progression of Parkinson’s Disease (PD). The
clinical features of PD usually emerge in
mid to late adulthood with tremor and
slowness being the most obvious initial
symptoms. Over time the disease and
disabilities progressively advance despite
treatments that temporarily improve the
signs and symptoms of PD. While the
current treatment options for PD are
10 St. Louis APDA LiNK
symptomatic, meaning they relieve the
signs and symptoms of PD, there are
long term side effects associated with
these drugs, such as fluctuations (wearing off ) and dyskinesias (involuntary
twisting, turning movements). Moreover, no treatment has been definitively
identified to slow the progression of
PD, and it remains of interest to develop agents or drugs to achieve this.
Currently, we are enrolling patients in
one neuroprotective clinical trial. The
study is looking at whether creatine, a
natural amino acid (protein building
block), will help in the slowing of PD.
Patients must have been diagnosed
with PD within the last five years and
only taking medications to treat their
PD for up to two years. n
If you are interested please call:
Melissa Ammel
Email: ammelm@neuro.wustl.edu
Phone: 314-747-3470
November 2008
Luck
3
1
y
What’s LUCK got to do with it? Rather, it had everything to do with the overwhelming generosity of our corporate
sponsors: at the Diamond level ($10,000)
Benton Homebuilders and Fairfield
County Community Foundation-Donor
Advised Fund; at the Gold level ( $5,000)
Plaza Motors; at the Silver level ($2,000)
Slay Industries and Sunrise Senior
Living; at the Bronze level ($1,000)
Cooperative Home Care, Delmar Gardens Family,
Kellwood Foundation, National City;
and at the Pewter level
($ 500) Fox Family
Foundation, James
& Janet Otis, Pulaski Bank, and
Suntrup Automotive Group.
It had lots to do
with our Honorary
Chair-couple, John
and Debbie Capps.
It had everything to
do with the more than
157 creatively designed
and beautifully displayed
auction gift baskets created under the direction of one of the most extraordinary basket makers in the city, our very own Lynda
Wiens and her assistant Lynn McQuistonFall. Jill Garlich put our fashion show
together with the help of Emily McNulty
from the selection of stores, to the choice
of models and escorts, to choosing music and lighting and staging. Our emcee,
chief meteorologist Kent Ehrhardt from
KMOV-TV 4, kept our guests entertained
as our celebrity models and escorts adorned
the runway. It had everything to do with
our chic fashions modeled by personalities Vickie Newton & Lisa Manzo from
November 2008
KMOV-TV 4, Michelle Anselmo from
CW-11, Elliott Davis & Sean Conroy
from Fox 2 News, Randy Gardner from
News 20, Gilberto Pinela from City TV
10, Tom Ackerman from KMOX Radio,
Ed Goodman, Dana Daniels and Mary
Ann Carson from KEZK 102.5, Laurie
Mac from KHITS 96, and Andy Strickland from 1380 ESPN, John Kelly the
St. Louis Blues Announcer and Gina
Kurre. AND Janet Conners, Sarah
Craig, Bill Donius, Pat Garlich, Mary
Hebrank, Elena King, Matt LaMartina,
Carlos Leon, Joe Lynch, Dr. Joel and
Monica Perlmutter, Kathy Peterson,
Rich Schindehette, Hank Slay, Laurie
Stafford, Kris and Lisa Suntrup, Addie
Tompkins, Risa Zwerling Wrighton and
Mary Yates…couldn’t have done it without you. We had over 426 guests in atten-
dance and will donate a record
$67,000 to benefit the St. Louis Chapter of the American Parkinson Disease Association patient services and research. Over
500 raffle tickets were sold, as we raffled
off beautiful earrings, bracelets, necklaces,
pearls and a diamond to 13 lucky guests
courtesy of our philanthropic local jewelers: Blust Jewelers, Captivations Jewelry
Design Studio, David Kodner Personal
Jeweler, Glenn Betz Jewelers, Genovese
Jewelers, John Anthony Jewelers, Lordo’s
Diamonds, Michael Herr Diamonds and
Fine Jewelry, Saettele Jewelers, Scotsman
Coin & Jewelry, Vincent’s Jewelers, Vinciguerra Jewelry and Ylang Ylang Fine
Designer Jewelry. We selected a new ven-
ue, a new month, and attracted many new
faces (in addition to our regular attendees)
and are so grateful for everyone’s support in
making this event a HUGE success. The
tables displayed gorgeous centerpieces donated by these local florists: Lorene Rowland (A Floral Gallery), Ahners, Alex
Waldbart Florist, Always in Bloom, Botanicals Design Studio, Bozzay Florist,
Flamenco Flowers and Sweets, Hi Ho
Helio, Kirkwood Florist, Ladue Florist,
Mexico Road Florist, Orchid Dell, Sisters Flowers & Gifts, Schnucks Markets
and Wildflowers. None of this would have
been possible without our muti-talented
committee of Carol Feuerhahn, Gerry
Francis, Barb Gellasch, Debbie Guyer,
Brandi Koziatek, Elaine Lindecke, Chris
Lynch, Nancy Marble, Kay Meyer, Barb
Nelson, Dayle Norber, Bianca Olson,
Betty Rakestraw, Dorothy Reimers,
Betty Shepley, Nancy Thomas, Addie
Tomkins, Anne
Trower and
Helen Weiss (in memoriam). Featured
entertainment provided by Madeleine
Hackney & Arash Sabet (Tango dancers) narrated by Gammon Earhart, PhD
who helped tie in the benefit of dance to
persons with PD in addition to the Gerry
Stretz-Yvonne Meyer Professional Dance
Studio. Our phones at the APDA I & R
Center have been ringing off the hook with
praise of this event. We hope to surpass
our efforts next October 12, so mark your
planners for that special date in 2009. You
won’t be disappointed! n
St. Louis APDA LiNK
11
Tributes & Donations
Honoring
60th Wedding Anniversary
Don & Ann Atkins
Charlotte Shelburne
Wedding of Michelle Baker and
Brian Schmitt
Michelle Baker
Retirement of John and Sharon
Baldwin
Charlotte Shelburne
John & Debbie Capps
Mark & Nancy Kodner
Mrs. Martin Kodner
50th Wedding Anniversary
Roger & Judy DeWoskin
Vicki & Norman Litz
80th Birthday
Marian Eisenberg
Diana Barnholtz
Elmer Esrock
Popee & Harvey Shapiro
Virginia Glennie
Donald Glennie
60th Wedding Anniversary
Mr. & Mrs. Ralph Goldsticker
Ralph Herzmark
Dee Rosenthal
Mrs. Harold Sachs
Elizabeth & Bert Schweizer II
Mary Silverman
Special Birthday
Natalie Handelman
Barbara & David Boxer
Special Birthday
Fred Hogenkamp
Grace Kasal
Marriage of Sharon & Josh Huffer
Jana Stiller
W. Harry Hunt
William J. Hunt
A Speedy Recovery for Beverly Leve
Hilda Fendelman
Special Birthday Lois Miller
Mrs. Lois Ross
Dr. Joel Perlmutter
Mark & Nancy Kodner
70th Birthday Elaine Sattler
Irene & Jim Hill
Special Birthday
Ben Schulein
Helen Goldsticker
Walter Slattery
Virginia Slattery
Terri Taylor
Roz Gad
Recovery of Dani Toney
Vicki & Norman Litz
Special Birthday Elaine Varnador
Richard & Sharon Holt
Maurice Wood
Leila Wood
Remembering
Martha Appelbaum
Cathy Clever
Geralyn Deken
Don, Karen, Jenn, & Bryan
Kayser
Robert & Roseann Ogden
12 St. Louis APDA LiNK
June Backus
Ruth Balsley
Mr. & Mrs. David Jenkins
Bill & Ruth Kenkel
Robert & Frances Mack
Mr. & Mrs. George McGrath
Mrs. Viola McGrath
Madelon Zoeller
Theodore Barkau
Louise Feager
Norman Barnett
Doris & Jerry Auslander
Verla Becker
Chris Becker
Bernard “Buddy” Bernstein
Mitch & Lynda Baris & Family
Donna & Lou DePrizio
Matthew Favazza
Robert Friedman
Steve & Gerry Kleine
Sanford & Hadassah Lebman
Beth & Steve Mueller
Harvey & Renee Noble
Linda & Bob Saltman
Mr. & Mrs. Mel Schnurman
Robbie Wexelman
Stan, Donna, Mark & Molly
Wilensky
Clyde Besand
Richard & Louise Wibbenmeyer
Jean Bollmeier
Beverly Banks
Mr. & Mrs. John Larsen
Roberta Sterling
William David Bowers
James & Mary Lou Bertolino
Lynn Boelter
Jeff & Penny Dewerff
Margaret Foster
Patsy Gilchrist
Liberty Villas of Carbondale
Candy Morin
Alexis & Steven Sturm
Merlin Westenberger
Guy Brown
Michael & Anne Flahive
Roberta Buchman
Herbert Buchman
John Burpee
Barbara Lenz
June & Henry Buschman
Elmer & Janeth Boehm
Eva Cancienne
Kathleen & Mark Fernandez
Leigh & Elgin Manalang
Kevin & Tina McCotter
Janet & John Schmitz
Edward Capstick
Brendel Architects, LLC
Mel & Dorris Grillion
Carl & Lynn McMurtry
Eugene & Frances Milzark
Pagano Land Development, LLC
Sandy Strathman
Selena Carter
Lee Dale & Norma Plank
Mr. & Mrs. Brun Puscian
St. Peters Parkinson’s Support
Group
Edmond Daffron
William & Verna Brothers
Jesse & Aileen Daffron
Dr. & Mrs. J.J. Doggett
Marvin & Sondra Kesterson
Peter & Kathryn Kirvan
Mark & Rebecca Neil
Parc Forest Owners Association
Dorothy Smith
Charles Wright, Jr.
Robert Deufel
Dennis & Kay Anstine
Jo Ann Drennan
Margaret Crouch
Donald Eldredge
Barbara Bohne
Dr. & Mrs. Bill Clark
Patricia Delafield
Ann White
Louis Ettman
June Laba
Barry Fendelman
Stan, Donna, Mark, & Molly
Wilensky
Mike Franke
Helen Stahlhut
Joan Frelich
Ralph & Helen Goldsticker
George Fugel
Jean Bartel
Bill & Ada Billings
Debbie Guyer
Gloria Krimmel
Ron & Diane Lindaver
Gerald & Patricia Mahoney
McKnight Place Extended Care
Janet Geno
Jim & Nancy Hoffman
Ben & Shirley Schuler
Stanley Gershon
Zella Rubin
Kay Glassman
David Gelfand
Alvin Goldfarb
Karl & Debbie Guyer
William Gonz
Ray & Pat Kergo
Mother of Margaret Gooden
Ralph & Helen Goldsticker
John Gould
Delores Jane Gould
Ginny Grieshaber
Robert & Lynda Wiens
Edward Hanlon
Tom & Ann Brais
Mr. & Mrs. James Buehler
David & Doris Eggers
James Hanlon
Tom & Linda Hanlon
Joye Kamp
Jim & Denise Masterson
Ken & Marianne McGee
William & Dorothy Mill
Gary & Claudia Neuberg
Angelo & Betty Panourgias
Mr. & Mrs. George Paradissis
Tom & Phyllis Pasley
Mildred Hayden
Roberta Stelzer
Eugene Herbig
Mr. & Mrs. Pat Gibbons
Doug Hiestand
Stan, Donna, Mark, & Molly
Wilensky
Hal Hinnah
Stu & Jenn Dobbs
James Hintz
Bill & Shirley Andrews
Deborah Cutter
Darla Flippo
Deborah Hensley
Margaret Leatherwood
Deborah Murie
Betsy Pevey
Susan Shannon
William Hise
Tood Werpy
Larry Holder
Matt & Jackie Holder
Glenn & Shirley Jones
Joseph Huber
Flory & Millie Kramper
Ronald G. Jansen
Patsy Chandler
Bobby & Kristi Jansen
Michael & Marilyn Jansen
Daniel S.M. Johnson
William Ward
Chester Kamp
Mr. & Mrs. James Westbury
Carol Kaufman
June Laba
Thomas Knox
Dave & Patty Benedict
Lucretia Lingle
John L. Krieger
Carol Ann Krieger
Helen Kudelka
Janette & Michael Barry
Charles Bayer Family
Robert Bayer Family
John & Shirley Boneau
Leona Griffin
John Kedelka, Sr.
Ruth Walters
O.B. Lacoste
Charles Haun
Margaret Haun
Rolland Haun
Charlene Haun Kozloff
Julia Haun Schaffner
Harold Lamont
Northwestern Tools, Inc.
Roberta “Pudge” Landau
Charlotte Eldredge
Frances Glazer & Family
Debbie Guyer
Susan & Robert Levin
Mary Silverman
Betty Langhauser
Syble Lea Self
Dora Belle Lilledahl
Joe & Peggy Briscoe
Josh & Kaycie Briscoe
Sandy & Ndue Dokaj
Glen & Debbie Haman
Mark & Linda Hartman
Roger & Terry Lilledahl
Dave & Teresa Samuels
Kathleen & David Smith
Rosemary Staat
Bonnie Linkemer
Mr. & Mrs. Larry Trochtenberg
David Lipman
Fran & Sid Axelbaum
Peter Mani
Joseph & Helena Bobnar
Patricia Crowley
November 2008
Thomas & Margaret Fussell
Barb & Jim Gellasch
Tom Jokerst
Harriet May
Bud & Betty Rakestraw
Arthur & Michele Romane
John & Jean Spatz
Cary & Wilma Swan
Stephen & Susan Viefhaus
Cheryl Mansell
Roger & Joyce McDaneld
Shelby D. Mathes, Jr.
Mark & Brenda Altadonna
Bersche & Gardner, LLC
Catholic Urban Program
Stephen & Tricia Dinkelman
Dardanella Doyle
Gordon & Cindy Gregson
Clyde & Joyce Heller
Barry & Cathy Hoffmann
William & Maxine Johnson
Joseph & Barbara Klein
Samuel & Susan Kohler
Daniel & Betty Kohnz
Vernon & Sevgi Kovarik
Nancy Mathes
Gary & Angela Most
Kenneth Niemann
George Obernagel III
Leo & Deloris Scaturro
Robert Simpson
Billie Wuest
Harold Meyer
Dolores Meyer
Jack Sidney Moehle
Elizabeth Alejandro
Michael Baker
Jean Tierney Beasley
Robert & Shirley Becker
Roger & Mary Bottila
Jim Bruggeman
Andrew & Pam Doehring
Caroline Duncan
Richard & Lois Ebel
Chris & Courtney Erdley
Dale & Arlene Fauss & Family
Kim & Marty Ferguson
Robert Gasaway
Gorham Family
Charlie & Marilyn Graf
Robin & Greg Gutzler
Jim & Kelly Hill
Marion Juengel
Harry Katz & Family
Arline Klein & Family
Carol Kusmec
Lou & Kate Ladd Family
Anita Lamont
Kenneth & Marian Lemp
Kathleen Newbold
Cindy Proehl
Ruth & Don Proehl
Marty Richmond
Mr. & Mrs. R.M. Schaefer
John Tierney
Karen Castelli Tierney
Richard & Jeanne Tudor
Lance Turner
Eugene & Carolyn Vasel
Barb Weir
Dorothy Moog
Jill Stein
Frank Mormino
Anthony & Josephine Mormino
November 2008
Gus Mormino
Anthony & Josephine Mormino
Dr. Gus Mormino, Jr.
Anthony & Josephine Mormino
Peyton Mosby
James Williams
Kelly Nebuloni
Christine Nebuloni
Jane Olliges
Henrietta “Hank” Chesnek
Joan Ostlund
Nancy Messina
Chester Partrich
The Harris Family
Megan Rafuse
Laverne Ploesser
Mr. & Mrs. Don Pashia
Silvio Pucci
Chris & Erin Turner
Ara D. Lynch Ragan
Brad Sexton
Bill Reed
Lois & Moe Mohesky
Jo Ella Reed
ACUSD #11 Music Dept.
Carolyn Ledbetter
Rev. Victor Ramsey
Don & Norma Ridlen
Eileen Reevees
Earnie & Pat Allison
Betty Rose
Roger & Mary Smith
Rudolph Reiner, Sr.
Freesmeier Family
Vivien Gardner and Family
David Gierada
Ed & Pat Goldstein
Ann Hughes
Mr. & Mrs. William Konieczny
Hannelore Kump
Albert Linnebach
Christine Linnebach
Siegfried & Leona Schottenhaml
Barry & Janise Webb
George & Louise Wilhelm
Cora Zamora
Mary Ann Rielly
Deborah & Lanny Bell
Mary Lee Bradbury
Dolores Busken
Mitch & Chris Champagne
Tim & Kathy Feldewerth
Laverne Fitzgerald
Arline Fry
Russ & Barb Gove
Rochelle Hamilton
Shirley & Richard Hedley
Cheryl Hibbeler
John & Judi Hooker
Bill & Martha Kaufhold
Dennis & Bonnie Loeffler
Jim & Linda Reed
Jack & Kathy Reilly
Tom Rielly & Friends
St. Peters Parkinson Support
Group
Lucille Schneider
Elyse & Frank Schuman
Jim & Kathryn Schweigert
Sam Scott
Millie Snowden
Pat & Jan Sullivan
Marvin & Julie Sutter
Richard & Kathleen Umfleet
Jim Waddington
Gertrude Rikli
Mr. & Mrs. Eugene Meffert
Joseph Roggi
Evelyn Roggi
Paul Ronsick
Community Wholesale Tire, Inc.
Gary Lange
Mid-America Coffee Service
Neumayer Equipment
Mr. & Mrs. Wayne Nienhaus
Plaza Tire Service
Glenn Ronsick
Bill Rosen
Roberta & Larry Trochtenberg
Shirley Rosenbaum
Mr. & Mrs. Allen Kolons
Herschel Rotter
Doris & Steve Schwartz
Leonard Sappington
Faye & Clark Compton
Mr. & Mrs. Gene Mueller
Bob Schmidt
Vicki & Norman Litz
William C. Schnable
Dr. & Mrs. John A. Headrick
Bill & Lyn Heaton
Michael, Patricia, & Michael
Woodson
Arnold Schnur
Marilyn Schnur
Tom Schott
Dale Kingsbury, Jr.
Charles Schukai
Don & Norma Ziegenhorn
Robert Seger
Joe & Mary Ann Fisch
Halo Investments LLC
Arthur Horn
Mrs. Gertrude Moerschell
Michael Reed
Art & Loretta Schaefer
Edward Simpson
Glenda Jaszarowski
Billy & Lucille Steele
Jane T. Smith
W.R. & Shirley Horlacher
Mrs. Jean Shull
Mary Bell Stone
Kathleen Broughton
Ashok & Sandy Chawla
James & Kay Coen
Jennifer Denny
Jim Finley
Jaclyn & Susan Siegfried
Ruth Rose Welliver
Mr. & Mrs. Steve Wilks
Kate Williams
Jean Tierney
John Tierney
Jack Unger
April Kwiatkowski
Charles Wainwright
Bob & Lorraine Fredericks
Duane & Dorothy Groff
Marge & Noel Miller
Dorothy Wallhermfechtel
Ann Lovell
Mr. & Mrs. Bill McDonough
Alice & John Slais
Dr. Harold Walters
Mary Walters
Helen Weiss
Mary Baer Fisher
Ralph & Helen Goldsticker
Debbie Guyer
June Laba
Elizabeth & Bert Schweizer, II
Robert & Lynda Wiens
Venita Williams
Chris & Bill Clark & Kids
Robert Wischmeyer
Elton & Betty Lou Wischmeyer
Malcom Wittels
Mrs. Harriet Abatgis
Shirley Worstenholm
Russ & Ann Doerner
Frances, Gary, Debbie, Kent
& Ellen Peccola
Charles & Mary Ann Wallace
Charlene Ward
Dwight & Susan Worstenholm
Walter Wuertz
Irene Wuertz
Victor “Gene” Yaggi
Neil & Esther Claussen
Mr. & Mrs. Thomas Claussen
Wallace & Mary Gassei
George Graham
Robert & Julia Hawkins
Reva & Allan Howard
Mr. & Mrs. Emil Kouba
Gerald A. Mack
Herman & Concetta Macormic
RB & Gladys Malone
Dottie & E.C. Mulligan
Mark & Lisa Smith
Raymond & Doris Wyatt
Doris Yeast
Jeff & Louise Levine
David Zeibig
Beverly Favazza
General
Thelma Adams
Chad & Julie Albers
Allergan
Ralph & Doris Jean Anselment
Dean & Barbara Baker
Ann Barlow
Herbert & Iva Jean Bayley
Willard & Barbara Benz
Bill & Ada Billings
Bill Birk
Boehringer Ingelheim
Pharmaceuticals, Inc.
John Bolger
Betty Brown
Brown Construction –
Kevin Brown
Marjorie Brown
Brown’s Feed & Chemical
Peg Bruno
Bryant & Ward Truck & Trailer
Sales, LLC
Bryant & Ward Parts Division
Campbell Enterprises of
Illinois, LLC
Ralph & Wanda Campbell
Carmi Lions Club
John & Chris Carrel
Ruth Shirley Chase
Kevin & Sethan Chastain
continued on page 14
St. Louis APDA LiNK
13
Tributes
continued from page 13
Bob Clay
Walter Cook
Dr. Paul & Sharon Diehl
Don & Diane Donlon
James & Sheryl Eadie
Kevin & Beth Ann Ellis
Jean Emory
John & Karen Evers
First Bank of Carmi, IL
Merrel & Deane Fleck
George Frenzel
James Frick
R.H. Gates
Ralph & Helen Goldsticker
Graycor
Beulah Greer
Jerry Gunn
Hale Body Shop – David &
Martha Templeton
Rex & Juanita Harris
Bernhard Hartmann
Bill & Carolyn Hays
Doug & Larissa Hays
Hellenic Spirit Foundation
Integra Bank
John & Brenda Jansen
George Johann
Jim & Maxine Jones
Curtis & Kara Kessler
Sharna Kohner
James Konrad
J. Dennis Leary
Robert & Susan Levin
James Lubbers
Nick & Diane Ludwig
Mark Twain Area
Parkinson’s Support Group
Elizabeth Marshall
Mattingly Sales & Service
Loyce McGinnis
Charann Meloney
K.W. Mihill
Monsanto Fund
John & Linda Neporadny
Bob & Marilyn Nolen
William & Ruth Norris
Novartis
John & Barbara O’Daniel
John Polansky
Dave Portscheller
Rotonda Foundation
Rush Appliances, Inc.
Susan Schilling
Audrey Schmitt
Mrs. Gladys Schmidt
Donald & Ivy Schneider
Vito Scorfina
Curtis & Janis Shannon
Martin Shrader
Mr. & Mrs. W. Slattery
Southeastern Illinois
Parkinson’s Support Group
Jill Stein
John Taylor
TEVA Neuroscience
TOPS IL 2497 Carmi –
Sherie Logan
James & Jean Ellen Trubshaw
Vernalis Pharmaceuticals
Judith Walsh
Cathy Watts
Helen Weiss
Mark Whitehead
Stephen & Linda Wielansky
Debra Wood
14 St. Louis APDA LiNK
Disease Modification
continued from page 6
not shown significant effect (vitamin E and
others). There are a couple of large studies underway using this approach studying
creatine and coenzyme Q10 because preliminary studies indicated that they might
be beneficial.
A new way devised to try to get at the question of whether there may be disease modification was thought up for medications that
clearly do have some (mild) symptomatic
benefit for PD as well. This is the so-called
“delayed start” type of study. One group
of early PD patients not yet needing usual
treatment starts the medication immediately. The other matched group does not start
the medication for an initial “placebo” part
of the trial but goes without any medication
for that part of the trial and then starts the
same medication later in the “active treatment” part of the trial. Then both groups
are being actively treated for an additional
period of time without any other medication used. After that additional period of
time, the two groups are compared to see
if there are significant differences between
the two groups. These may be differences
in motor performance, ability to do Activities of Daily Living (ADL’s), etc. If there
are significant differences at the end of the
active treatment phase such that the group
started earlier on the medication is doing
better, it is again assumed that that must be
due to some disease modification property
of the medication that occurred because
they were started on it earlier. This is the
type of study done with rasagiline [Azilect]
and that is still ongoing as the ADAGIO
trial but should be completing by about the
end of 2008. After that, there will need
to be some period of time to analyze results but hopefully those may be available
sometime next year. In the ADAGIO trial,
early PD patients entered a double-blinded
study. Neither they nor the physician knew
if they were in the group that initially got
rasagiline or waited without any medication
for nine months – the “placebo” part of the
trial – and then started rasagiline with both
groups then taking it another nine months
– the “active treatment” part of the trial.
Preliminary results released by the company
that makes Azilect (and is sponsoring the
trial) are that there remains a significant
difference between the two groups with the
earlier treated group remaining “better” in
terms of scores on the UPDRS rating scale.
We will wait for the final analysis results
of the study. Even now though, it is realized
that a positive result from the trial could
have more than one interpretation. One
interpretation is that the earlier group had
“true” disease modification (due to neuroprotection) as a result of starting rasagiline
earlier. However, that may not be the case.
One could also propose that the difference
did not have to do with “protecting” dopamine cells but had to do with preserving
or enhancing other symptomatic compensatory effects. In a way, we could still consider that to be “disease modification” but
it would not be “neuroprotection”. If it
is not a “neuroprotective” effect that is exclusive to the nature of rasagiline, then it
might be seen with other PD medications
already available if they were started early
and studied in the same way. Even if there
was a “neuroprotective” effect, the question
could be asked as to how much of an effect that is and whether it is worth the cost
of the medication (if the effect is relatively
small). Finally, what is still completely unanswered by this type of study is whether
a disease modification effect (whether or
not it is neuroprotective) would continue as
PD progresses and other usual symptomatic
medications need to be added. That is, is
there only a small period of time in early
PD that we have to intervene (by starting
rasagiline early) and have this effect or does
it extend over a longer time.
We continue to learn more about potentially better ways to approach the treatment
of PD. Unfortunately, a single study is not
going to answer all the questions we want
answers for nor give us an “only one right
way” to approach treatment. n
November 2008
A “Hull
of a
Race”
In 2005, Lori Griffith, a physical therapist working then in the
Hannibal area, established the
Mark Twain Area Parkinson Support Group. Lori, in working with
persons with Parkinson’s, recognized the need for a support
group. “People with common
problems can often help one
another as they compare and
exchange ideas”. In addition to
simply sharing with others, guest
speakers such as physicians, nutritionists, speech pathologists, and
pharmacists were invited to share
their areas of expertise with the
group. Videos and DVDs pertaining
to PD have also been
shown to expand the
information pertaining to Parkinson’s
disease.
Since there is no
cure for this disease at
this time, research into finding
Anxiety
in
for
Parkinson’s Disease
a cure aggressively continues and will require funds
in order to continue in the
future. Lori, in addition to
being a physical therapist, was a competitive runner. It seemed
like running would be
a natural way for this
group to raise money for
Parkinson’s research. Their
5K “Hull of a Race”, held in
Hull, IL (just across the river
from Hannibal, MO), took
shape and is run annually in
the morning of the third Saturday in August, the same
day as the Hull picnic.
This year was the third year
for the race and since its beginning, the Mark Twain Area
Parkinson Support Group has
raised over $8,000 to donate toward Parkinson research, with the
hope to increase the total monies
raised every year. Local sponsors help
defray some of the expenses associated
with the race. It has been professionally timed and by 2009, it will become
a certified course. The support group
itself is small but many volunteers from
the community have joined forces to
help with the race. The Mark Twain
Parkinson Support Group invites you to
check out race results on their website
and to consider registering for the race
online at www.marktwainparkinsonssupport.com.
The St. Louis Chapter APDA were
recipients of a check in the amount of
$6,500 this year, funds which will be
given to Dr. Perlmutter’s Advanced Center for Parkinson Research to further investigate areas to slow the progression of
the disease and to hopefully find a cure.
Some of the studies being supported
by Dr. Perlmutter and his team can be
found in Dr. Perlmutter’s article starting
on page 3 of this newsletter. n
Parkinson Disease
continued from page 7
people, panic attacks are very predictable, like people with a fear of
heights. However, if panic attacks
sometimes come “out of the blue,”
happen repeatedly, and have no
other probable cause, the diagnosis
is panic disorder (or “anxiety disorder due to PD”). Often panic disorder patients start curtailing their
activities, from refusing to drive or
go to the store up to never leaving
the house. The good news is this
is one of the most treatable conditions in medicine. I believe panic
disorder should usually be treated
by a psychiatrist because most
other doctors are not experienced
in providing either the medical or
psychological treatments that are
most effective for this condition. At
the very least, you should consult a
psychiatric specialist if your treatNovember 2008
ment is not working after a month
or two.
7. Some people with PD call their
tremor “nerves” even if they are
calm and not worried. If you have
no fears, apprehension, or panicky
feelings, this is just PD and it may
confuse doctors if you call this being “anxious” or “nervous.”
8. Some patients have a sense that they
are shaking, but no one can see it.
This “internal tremor” can happen
in PD without anxiety, but many of
these patients also have true anxiety, and vice versa.
A real problem is that there is precious
little careful research into the causes and
optimal treatment of anxiety in PD.
In research supported in part by the
Greater St. Louis chapter of the APDA,
we showed that patients with off-period
anxiety or depression have an abnormal
brain response to levodopa in a part of
the brain linked to depression. Drs. Tamara Hershey, Joel Perlmutter and I are
involved in ongoing research into what
causes anxiety in patients with PD and
how to best treat it.
We are in the last few months of a
research study sponsored by the National Institutes of Health that is trying
to find out how best to treat symptoms
like poor sleep, low energy, apathy, sadness, and worries in people with PD
(www.urmc.rochester.edu/sadpd). It
involves 7 visits to WU in a 12-week
period, but the treatment is free if you
qualify for the study. Those interested
should contact us at 314-362-6514 or
kevin@wustl.edu. n
St. Louis APDA LiNK
15
Save These Dates!
December 7, 2008
Parkinson Education Meeting (PEP)
Dr. Joel Perlmutter, Director of the Center for
Advanced PD Research and Medical Director
of the St. Louis APDA will discuss Parkinson’s
Disease and answer audience questions dealing
with issues such as the Parkinson-like disorders,
lewy body disease and dementia in PD, and other
questions you have for the doctor.
PLEASE NOTE THAT OUR SATELLITE
RESOURCE CENTER WILL BE CLOSED FOR
THE THANKSGIVING HOLIDAY
(NOVEMBER 27 and 28, 2008)
AND FROM DECEMBER 22, 2008 through
JANUARY 9, 2009 so that our volunteers
may enjoy the winter holidays with their
families. Please contact the
APDA Information & Referral Center
314-362-3299 for assistance.
Washington University School of Medicine
American Parkinson Disease Association
Campus Box 8111
660 S. Euclid Ave.
St. Louis MO 63110
Address Service Requested
April 18, 2009
Support Group Leaders Training Session
May 18, 2009
Nat Dubman Memorial Golf Classic at Lake
Forest Country Club
July 26, 2009
Parkinson Education Meeting (PEP)
Dr. Joseph H. Friedman, Director, NeuroHealth
Parkinson’s Disease and Movement Disorders
Center in Warwick, RI, Clinical Professor in
Department of Clinical Neurosciences at Brown
Medical School, and author of the 2008 book,
Making the Connection Between Brain and
Behavior: Coping with Parkinson’s Disease,
will speak on this topic.
October 12, 2009
Celebrity Fashion Show/Luncheon/Silent
Auction at the Sheraton Westport Chalet
NON-PROFIT
U.S. POSTAGE
PAID
ST. LOUIS, MO
PERMIT NO. 1032