Documents
Resources
Learning Center
Upload
Plans & pricing Sign in
Sign Out

Winter Newsletter

VIEWS: 9 PAGES: 11

									Winter 2003 Newsletter

The APDA Center of Advanced Research in Los Angeles

The University of California, Los Angeles (UCLA) APDA Center was created in
1998 and is entirely devoted to promote and support new basic research
projects on Parkinson's disease (PD). UCLA has a large number of basic
scientists and clinician-researchers actively engaged in research on PD.
However the field is moving fast and new talents need to be recruited to
help find a cure for the disease. The center is fortunate to be part of a
vibrant scientific community and its goal to attract to PD research new
investigators at the beginning of their career or established investigators
with expertise or ideas that can accelerate the process.
Original funding from the Center has been instrumental in starting projects
that are now supported by a NIH-funded Udall Center (the only one West of
the Mississippi), the Veteran Administration-supported Southwest PADRECC and
a large NIH-funded study on the role of genes and the environment in
Parkinson's disease. Researchers previously funded by the Center are now
identifying new drugs for PD, genes and environmental toxins that could play
a role in the disease.
Over the past year, the APDA Center has funded 8 new lines of research on
PD. These include research on genes affected in new mouse models of PD,
neuroprotection by estrogens and antioxidants, models of PD in the fruit
fly to discover mechanisms that block the effects of the genes that cause PD
in some families and may play a role in non-familial PD, markers of the
disease in patients blood cells and new ways to transform stem cells (from
animals) into dopaminergic neurons, the type of cells lost in PD.
We expect that the funds provided by the APDA Center will help these
investigators to evaluate their ideas and develop research project that will
attract government funding and have a critical impact on finding the cure
for PD. This is an essential role of private funds and one that makes an
enormous difference in enticing talented researchers to devote their time
and effort to the fight against PD.
The Center director is Marie-Francoise Chesselet, MD, PhD. Dr Chesselet
received her MD and PhD degrees from the University of Paris and pursued her
training at MIT and NIH in this country. She held faculty appointments at
the Medical College of Pennsylvania and the University of Pennsylvania
before being selected by UCLA in 1996 as the first holder of the Charles H.
Markham Chair, established in honor of Dr Markham, a pioneer in the use of
L-dopa in the treatment of Parkinson's disease and a member of the APDA
Scientific Advisory Board. Dr Chesselet has served on the scientific
advisory board of APDA since 1995. She is also the director of the Morris
K. Udall Center of Excellence for Parkinson Disease Research at UCLA.



Caregivers - Four Rules To Live By

1. Choose to take charge of your life. Don't let your loved one's illness
or disability always take center stage. We fall into caregiving often
because of an unexpected event, but somewhere along the line you need to
step back and consciously say, "I choose to take on this caregiving role."
It goes a long way toward eliminating the feeling of being a victim.
2. Honor, value and love yourself. You're doing a very hard job and you
deserve some quality time, just for you. Self care isn't a luxury. It's a
necessity. Self care isn't a luxury. It is your right as a human being.
Step back and recognize just how extraordinary you are, and remember your
own good health is the very best present you can give your loved one.
3. Seek, accept, and at times demand help. Don't be ashamed to ask for
help. When people offer assistance, accept it and suggest specific things
that they can do. Caregiving, especially at its most intense levels, is
definitely more than a one person job. Asking for help is a sign of your
strength and an acknowledgement of your abilities and your limitations.
4. Stand up and be counted. Stand up for your rights as a caregiver and a
citizen. Recognize that caregiving comes on top of being a parent, a child,
a spouse. Honor your caregiving role and speak up for your well-deserved
recognition and rights. Become your own advocate, both within your own
immediate care giving sphere and beyond.
Reprinted with permission of the National Family Cargivers Association,
Kensington, MD.
1-800-869-3650; www.nfcacares.org.

President¹s Message

Dear Friends,
As we begin 2003, the American Parkinson Disease Association looks to the
future with a sense of anticipation, promise, and an ever revitalizing
dedication to its stated goals and objectives.
As we look to this new year, to reinforce the commitment to our mission, and
our responsibility to serve those in need, APDA has added to the
headquarters staff two able administrators to bring about continued growth,
maintain sound fiscal management and foster new funding initiatives. APDA is
pleased to announce the appointments of Roseann Lofasso, CPA as Controller,
and Carl J. Sabatino to Corporate Development Director to help guide this
association into the future.
To further augment its corporate initiative, the American Parkinson Disease
Association is expanding its image to attract corporate interest, foundation
funding and partnerships. In this endeavor, we will host, in association
with a number of corporations and service providers, a series of fund
raising promotional events. We will present APDA's first broadcast telethon,
a special event food fair fund raiser, titled: 'Staten Island Eats,' and a
baseball fund raising program 'Playball for APDA' to be offered in select
minor league cities where APDA has chapters. These events are targeted to
local and regional communities with, however, a focus towards national
exposure, and future funding from new revenue sources.
And finally, in this year of enhanced corporate initiatives, new staff
members and fund raising events, we will build APDA's new national
headquarters on Staten Island. It is scheduled to be completed this year.
All of this is possible only with your continued support, as we ceaselessly
look for ways and means to better serve those most in need, and through
funding efforts, to continue critically needed research.
                                 Sincerely,



QUESTIONS & ANSWERS
QMy neurologist changed my medicine to Sinemet 25/100 and Comtan at 7am - 3
pm - and 11 pm continuing my Eldepryl at 10 am and 2 pm.
I tried this for two days and had such difficulty getting out of bed and out
of chairs - often I slide to my knees from the bed and then up to standing
position. The doctor said he would just have to put me back on the previous
schedule of Sinemet CR and Sinemet 25/100 7 am - 3 pm - 11 pm and if blood
pressure was at least 100/50 to take Eldepryl 5mg at breakfast and lunch.
For my atrial fibrillation I take 1/2 Coumadine 5mg and if pulse is 60 or
above 1/2 Lanoxin 0.25mg at 10 pm.
My internist feels the Parkinson medicine causes the radical fluctuation in
my blood pressure, which ranges from 82/48 Pulse 60 (usually in am) to
202/107. The extreme highs started in June. The high BP usually occurs in
pm. Internist prescribed Catapress 0.1mg one every 6hrs. if BP is 160/90 or
higher. It usually drops within 1-3 hrs - then sometimes it will start back
up. I may have one day a week with BP in mid range when I have energy to
shower and shave and go out to dinner.
Thank you for your attention.
AMany patients with PD have fluctuations in blood pressure. The pressure is
highest when the anti-PD medications wear off and your muscles get tighter.
This is like stepping on a hose - the water pressure at the faucet goes up.
Conversely, when the anti-PD medications are working your muscles are more
relaxed, the blood flows easier and your blood pressure is lower.
Therefore, blood pressure fluctuations are representative of "on/off"
fluctuations in response to medications. You should be taking your Sinemet
CR and immediate release every three to four hours after awakening not only
at 7am, 3pm and 11pm. This will help to smoothen out the "on/off"
fluctuations which include changes in blood pressure. Avoid Eldepryl,
especially if you have a history of atrial fibrillation.
QI have three problems: 1. Dizziness. I seem to be somewhat dizzy most of
my waking hours, or in some state feeling rum dumb in my head. I recently
had an MRI to determine the problem. 2. Balance. I am falling down on an
average of 4 times a day. 3. Eyesight. My eyes have been unable to focus
on anything less than 3 feet away. It makes it hard to see what your are
eating at dinner, when you change channels on the TV, and even see to read
your own wristwatch.
I would appreciate any information that you might have on any of the
problems that I have mentioned.
AIn terms of your dizziness - this is either due to a drop in blood pressure
when you stand up or alterations in blood pressure when your medication
works and then does not work. The balance impairment is best treated by
maximizing the anti-PD medications until you get into a state where you have
minimal dyskinesia or a very mild "off" period and then getting physical
therapy with balance training and leg strengthening. For double vision when
things being viewed are close - close one eye. Patients with PD lack the
ability to turn both eyes inwardly - this is called a lack of accommodation.
Prisms would help if it were a fixed degree of eye muscle imbalance but the
double vision and lack of accommodation fluctuates as the response to the
medication fluctuates. See an opthalmologist to rule out other causes of
blurry vision.
QA patient asked you to check into the effects on Parkinson's of being put
to sleep. You replied that surgery traumatized the patient. That is true,
but the question is what effects the anesthesia has on Parkinson's.
I also believe sleep has an effect on Parkinson's symptoms. Has there ever
been a study on this?
APatients with PD have many sleep disturbances. Restless leg syndrome is a
disorder in which patients feel an uncomfortable sensation in their legs
during the night which is only relieved by activity such as walking or other
physical activity of the legs. This is relieved with Mirapex or Requip.
Patients may awaken because their anti-PD medications wear off and tremors
or rigidity returns. For this take an extra dose of Sinemet immediate
release and the symptoms will go away. Other patients are awakened by thick
secretions causing choking. For this take Robinul at bedtime to decrease
the secretions. Urinary frequency is increased during the night possibly as
a consequence of a rebound diuresis in which the medications controlling the
PD symptoms also help inhibit your urinary bladder and when they are
withdrawn the bladder becomes more hyperactive. For this a bedtime dose of
Detrol or Ditropan helps. Finally dreaming is very active and may be
accompanied by movements in which the patients act out their dreams. This
may be reduced by taking less medications close to bedtime. Rule also out
depression as a cause of insomnia.




Physical Therapy and Parkinson's Disease.

Carmel Festa, M.S., P.T. Assistant Professor
Jefferey Rothman, Ed.D., P.T. Professor and Program Director
Physical Therapy Program
College of Staten Island, Staten Island, NY

Parkinson's disease (PD) is a chronic, progressive disease of the nervous
system resulting in disturbances of muscle tone, abnormal posture and
involuntary movements. The individual with PD usually exhibits a
combination of three classic signs which are rigidity (stiffness of
movement), bradykinesia (difficulty in initiating movement or slowness of
movement) and tremors. There are several forms of rigidity, but the end
result is difficulty for the individuals to relax their muscles.
Bradykinesia results in a slowness of movment causing the individual to show
involuntary movements usually of the hands, feet or jaw while at rest.
Problems with posture and balance are other major impairments associated
with PD. The person with PD, depending on the severity of the disease,
faces problems with movement , muscle strength and posture, loss of balance
and possibly falls, muscle fatigue and decreased endurance. Long term
effects of the disease are breathing and respiratory problems, muscle
atrophy and weakness.
Physical therapy can help the person with PD in the following manner:
1. Minimize and delay the progression and effects of the disease process.
2. Prevent physical deformity and joint contractures.
3. Maintain maximum functional abilities and activities for daily living
Initially, the physical therapist should perform a thorough examination of
the muscular, neurological, and cardiopulmonary systems of the individual.
The therapist will then formulate a treatment plan based on the findings of
the examination.
It is important that the physical therapist evaluates the influence of
rigidity, bradykinesia, balance, posture and tremor on the functional
performance and movement capabilities. The cardiopulmonary status of the
patient is also assessed to determine if the individual's respiratory
function has been affected by inactivity and decreased general endurance.
The physical therapy treatment plan will be based on the assessment of the
individual patient's needs. Early intervention is crucial and necessary to
prevent the possible devastating effects of PD, such as contractures and
deformities.
After the physical therapist has established the problems that are
interfering with the patients everyday lifestyle, she/he can plan the
appropriate treatment.The goals of the plan will aim to:
1. Prevent muscle contractures and maintain/increase range of motion in all
joints
2. Improve posture
3. Prevent muscle weakness
4. Improve mobility and motor function
5. Strengthen breathing ability
6. Improve balance
7. Improve daily living
8. Improve gait
9. Foster lifestyle modifications and adjustments to chronic disability
Five major areas may comprise the treatment plan:
1) Range of Motion Exercises They should be performed daily. Active or
passive exercises will help to prevent muscle or joint contractures. Gentle
stretching and joint mobilization may also be included. A therapist may use
myofascial release techniques to help decrease rigidity and stiffness in
joints and to regain motion.
2) Relaxation Exercises They are an important part of most treatment plans
as they help to relax the muscles and may decrease tremors. Relaxation
techniques can also help in stress reduction
3) Mobility Exercises They will help to maintain the individual's
functional movement patterns (standing up, sitting down, rolling over, etc)
and their independence in self care.
4) Respiratory Exercises They are used to improve lung capacity and
decrease their susceptibility to respiratory problems.
5) Gait Training Exercises They are designed to help the individual
difficulty with walking, poor posture and balance problems. Specific
exercises will help in improving a patient's walking ability, safety and
prevent falls. If needed a properly fitting assistive device (a cane, a
walker, orthotics, a wheelchair) can be ordered by the therapist.
Overall, the physical therapy treatment plan will help in maintaining
mobility, increasing endurance and muscle strength and improve lung
function. In cases where pain from the joints or muscles is present, the
physical therapist will also provide pain management techniques such as
craniosacral therapy, electric modalities, heat application or massage.
The therapist should provide the client with a complete home exercise
program and instruction. It is usually recommended that patients perform
their exercises on a daily basis. Family members can be taught the
exercises and also how to properly assist the patient on a daily base. Many
individuals with PD are part of group exercise programs that specifically
target the symptoms and movement problems of the group members.
Participants often benefit also from the support and communication within a
group setting.
Research has clearly documented the importance of physical therapy for the
person afflicted with Parkinson's disease. Physical therapists are licensed
professionals that provide services in private offices, hospitals, nursing
homes and private homes. A referral from a physician may be necessary to
visit a physical therapist depending on the state where she/he is practicing




SMALLPOX AND PARKINSON'S DISEASE
Every year, people with Parkinson's disease hear reminders to get their flu
and pneumonia vaccinations. Older people with disabling condition are more
vulnerable to these simple infections than the average population.
With all the media fuss about smallpox vaccination, it's natural to wonder
if seniors need to line up for smallpox shots too, THE ANSWER IS NO!
September 11 forced medical authorities to re-evaluate our country's
vulnerabilities to various attacks, including infectious agents. Several
cases of anthrax quickly occurred, apparently the work of some domestic "me
too" terrorist who remains at large.
The San Diego County Medical Society quickly brought together experts from
infectious disease, public health and emergency medicine, sending out
general education on bio-terrorism to all county doctors, characterized as
"the fastest and best" response by any medical society in California. We
continue to coordinate county public health, hospital emergency departments
and the private physician community.
Most experts say that smallpox is not a likely choice for terrorists,
because the infection spreads slowly, is rarely fatal and many older people
still have some immunity from prior vaccinations. However, San Diego is a
moderate priority target for terrorism, because of our large military and
tourist presence, our proximity to the Mexican border, and Al Qaeda already
trained some of the 9/11 crews here. For this reason, many experts believe
that smallpox vaccination should be offered to first responders, like
doctors and nurses that work in emergency rooms.
Because the infection spreads slowly, vaccination could be offered to the
rest of us if an outbreak ever happens. Even first responders in
low-priority towns and cities probably should be spared the risk of
vaccination, unless a problem happens.
Senior citizens may still have some immunity from smallpox vaccinations in
early life, but might need a booster if an outbreak ever happens in San
Diego. It is important NOT to get the smallpox shot if you or someone at
home has a weak immune system, because the shot could cause a full, possibly
fatal case of smallpox. Chemotherapy for cancer or for organ transplants,
also HIV infection are only some examples of weakened immune systems. Ask
your doctor about your immune system, but DON'T WORRY ABOUT GETTING SMALLPOX
SHOTS NOW!




RESEARCH AT NIH
Scientists have just released news of a hereditary cause of Parkinson's
disease (PD). Abnormalities in a gene called DJ-1 (PARK7) were found in
patients with PD from two different families; one from a small village in
the Netherlands, and another from a small village in Italy. These patients
had the hallmark PD signs (stiffness, slowing, tremor) but the symptoms
started earlier than (average age 31 years), and progressed very slowly
(average duration 18 years.) This finding will help scientists understand
the biological chain of events that lead to PD. Understanding these gene
abnormalities gives scientists and doctors the ability to intervene with
drug therapies.
The PD community can help the scientists to learn more about DJ-1 and about
the causes of PD by participating in the NIH study. The study involves a
questionnaire, and donating a small blood sample. Alternatively,
individuals are invited to go to NIH to participate in the study and for an
evaluation by a Parkinson's disease specialist. There is no costs to the
participants. NIH will reimburse all transportation and lodging charges.
If you are interested please contact Amanda Singleton
at (301) 402-6231 or singletam@ninds.nih.gov


The Placebo Effect in Clinical Parkinson's Disease Trials
J. Stephen Fink, M.D., Ph.D.
Chair, Neurology Department
Boston University Medical Center, Boston MA

A medication may have several effects on a patient. Some of these effects
may be directly related to the medication's effect on the body's functions
or physiology and this is called the pharmacological effect. Other effects
may not be linked directly to a pharmacological effect and this is called
the placebo effect and it can be observed when a pharmacologically inactive
substance is administered.
What is the placebo effect? What does the placebo effect have to do with
the process of developing new treatments or new medications in controlled
clinical trials? What is the importance of the placebo effect for clinical
trials in Parkinson's disease (PD)?
The word placebo comes from the Latin verb "placere," that means, "to
please." Placebo effect is the effect (usually beneficial) resulting from
the administration of an inactive substance. When a patient receives any
treatment, (whether it is an active treatment or not) there may be a
beneficial effect experienced by the patient because there is an expectation
of benefit. Placebo effects can result simply from contact with doctors or
other health care providers, even in the mere act of interviewing or
examining a patient. There may also be beneficial effects of additional
treatment or improved care provided during the clinical trial of a new
medication.   In the context of the clinical trial of new medications, the
term "placebo effect" sometimes refers to any improvement in symptoms
experienced by the control group. In addition to expectation of benefit,
other contributors to this improvement in patients' symptom scores may
include the tendency for patients to enter trials when their symptoms are
worse, and "bias" in the rater's scoring of patients' symptoms. The
beneficial effect resulting from the act of receiving treatment may be quite
powerful and long lasting. For example, in some studies of asthma and pain,
there was an improvement of 30-40% in subjects given inactive medications
(placebo). The beneficial effect of receiving any treatment is not limited
to medications, as the expectation of benefit alone may lead to improvement
in symptoms after surgical procedures as well. A well-known example of this
phenomenon in medical literature is the improvement in angina pectoris
(chest pain from cardiac disease) that accompanied a control surgical
procedure which consisted only of anesthesia and cutting the skin.
The placebo effect can interfere with the assessment of whether a new
medication or treatment gives genuine benefit. Therefore, when new
medications are tested, they are commonly compared to an inactive treatment
or placebo. This type of clinical trial is a placebo-controlled trial.
When neither the patient nor the examiner knows whether the patient is
receiving active treatment or placebo, the trial is referred to as
double-blind. When the subjects are assigned to active treatment or placebo
groups by chance, this is called a randomized trial. Randomized, double
blind, placebo-controlled trials offer the most effective way to control for
the placebo effect and have become the "gold-standard" in clinical trial
design for assessing new drugs or other treatments. For a new medication or
therapy to be considered effective, it must show to be better than a placebo
in a double-blind, randomized, placebo-controlled trial (sometimes the
comparison is made to another active treatment, instead of placebo).
Sometimes therapies that are thought to be effective are no better than
placebo when tested in this type of trial.
Long-lasting placebo effects have been reported in Parkinson's disease. In
some medication trials in Parkinson's disease patients, improvement in motor
scores of 20-30% in patients assigned to the placebo group has been observed
for up to 6 months. Similarly, improvement and deterioration in Parkinson's
patients have been observed after the introduction and discontinuation,
respectively, of placebo medication.
Placebo effects appear to be particularly evident in the clinical trials of
surgical therapies. In the double blind, clinical trial of human fetal
transplantation in Parkinson's disease conducted by Dr. Fahn, Freed and
colleagues, the control group received an "imitation" surgical procedure.
Several of the patients in the control group rated themselves improved one
year later. Similarly, 30% improvement in motor scores in the placebo
(imitation surgery) control patients has been observed in the double-blind
trial of porcine mesencephalic tissue in Parkinson's patients. In this
trial, improvement in the control group lasted at least 18 months, longer
than had been previously observed in clinical trials of medications,
suggesting that placebo effects may be more powerful in clinical trials of
surgical therapies.
What causes the placebo effect? It is not possible to test adequately for
placebo effects in laboratory experiments because animals are not known to
have responses to placebo.   It has been assumed that the placebo response
is not mediated directly through a physical or chemical effect of treatment.
However, a recent and remarkable study by Dr. John Stoessl and colleagues
demonstrated that the placebo effect in Parkinson's patients is accompanied
by a release
of brain dopamine from
the remaining midbrain dopaminergic cells. This suggests that the
improvement in motor function that is observed in the placebo groups of
clinical trials in Parkinson's disease patients might be due, in part, to
actual physiological changes in the damaged brain dopamine nerve cells.
In summary, the placebo effect is an important factor in the testing of new
medications for Parkinson's disease. It dictates the design of clinical
trials of new medications by the inclusion of placebo groups. The placebo
effect might be considered to "benefit" those Parkinson's disease patients
who join clinical trials and are assigned to the placebo group, as they may
demonstrate improvement in symptoms. Indeed, some of this improvement in
symptoms in the placebo group may actually be due to beneficial changes in
brain dopaminergic nerve cells. This perspective underscores the
often-spoken adage at Parkinson's disease centers: "One of the best things
to do when a patient first learns of the diagnosis of Parkinson's disease is
to join a clinical trial." Among the many benefits of such participation
may be the placebo effect!


A Letter from a PD Patient to His Friends

The following letter was written by an anonymous Internet Chat Group member
and is an excellent description of what it is like to live with Parkinson's
disease (PD). Perhaps you can use it as a guide in explaining to your
friends and associates what PD is all about:
"I have Parkinson's disease. It is not catching or hereditary. No one knows
what causes it, but some of the dopamine cells in the brain begin to die at
an accelerated rate. Everyone slowly loses some dopamine cells as they grow
older. If the cells suddenly begin to die at a faster rate, PD develops.
It is a slowly progressive disease usually occurring, as people get older.
Medicines can help. I'll take newer, stronger kinds over the years. Some
make me sick and take lots of adjustment to select the right dosage. Stick
with me. I have my good days and bad days.
Sometimes I cry and appear to be upset and you think you have done something
to hurt my feelings. Probably not. It is the Parkinson's. Keep talking to
me. Ignore the tears. I'll be O.K. in a few minutes.
You expect me to shake. Maybe I do, maybe I don't. Medicines today takes
care of some of the tremors. If my hands, feet or head are shaky, ignore
it. I'll sit on my hand or put it in my pocket. Treat me as you always
have. What is a little shakiness between friends?
You think not to entertain me anymore because I'm not grinning or laughing.
If I appear to stare at you, or have a wooden expression, that's the
Parkinson's. I hear you. I have the same intelligence. It just isn't as
easy to show facial expressions. If swallowing is a problem, I may drool.
This bothers me, so we'll mop up.
When we are ready to go somewhere and I get up, I can hardly move. Maybe my
medication is wearing off. This stiffness or rigidity is part of
Parkinson's. Let me take my time. Keep talking. I'll get there
eventually. Trying to hurry me won't help. I must take my time. If I seem
jerky when I start out, that's normal. It will lessen, as I get moving.
I need to walk each day. Two or three miles are good. Walk with me. Company
makes walking fun. It may be a slow walk, but I'll get there.
Remind me if I slump or stoop. I don't always know I'm doing this. My
stretching, bending, pushing exercises must be done every day. Help with
them if you can.
As my deeper tones disappear, you'll notice my voice is getting higher and
wispy. That's the Parkinson's. Listen to me. I know you can talk louder,
faster, and finish my sentences for me. I hate that! Let me talk, get my
thoughts together and speak for myself. I'm still there. My mind is O.K.
Since I'm slower in moving, my thoughts are slower too. I want to be part
of the conversation, let me speak.
I may complain that I can't sleep. If I wander around in the middle of the
night, that's the Parkinson's. it has nothing to do with what I ate or how
early I went to bed. I may nap during the day. Let me sleep when I can. I
can't always control when I'm tired or feel like sleeping.
Be patient, my friend. I need you. I'm the same person; I've just slowed
down. It's not easy to talk about Parkinson's, but I'll try if you really
want to. You must know that I need my friends. I want to continue to be
part of life. Please remain my friend!²
Note: This article was abstracted from PD News Vol. 8; issue 10, Dec. 2002
- Kenneth Square, PA



APDA News
Research
Dr. Chesselet of the University of California, LA, APDA Center for advanced
research, and Dr. Greenmyre of the Emory University, Atlanta Center were two
of the three recipients of a 20 million dollars, payable in 5 years, grant
from NIH. This is just the most recent example of how seed money invested
by APDA in Centers for Advanced Research paid off in obtaining multifold
larger funding from the federal government. A new APDA Center for Advanced
Research at Massachusetts General Hospital was recently established and
added to the other seven funded throughout the country.
Patients Support
The opening of two new Information and Referral Centers were recently
approved.   The Center in Erie, PA will support the Parkinson community in
North Western Pennsylvania and Western New York State, while the Center in
Gainesville, FL will support Parkinsonians in Central and Northern Florida.
Educational Literature
A new 33 page educational booklet entitled "Speaking Effectively" was
prepared by Bari Hoffman Ruddy, Ph.D., CCC-SLP, Assistant Professor at the
University of Central Florida, Orlando, FL and Christine Sapienza, Ph.D.,
CCC-SLP, Associate Professor at the University of Florida, Gainesville, FL.
This booklet will replace the APDA "Let's Communicate" booklet originally
authored by Marjorie L. Johnson, MA, CCC-R, of Methodist Hospital,
Minneapolis, MN.
PD Genetic Study
at Boston University
The Parkinson's Disease Genetic Study is seeking persons with Parkinson's
disease (PD) with a living brother or sister also with PD. For information
please contact Jeanne Latourelle at 617-638-5179 or visit their website,
www.bu.edu/genepd.




Information on Parkinson¹s Disease
Single copies of the following publications may be obtained free of charge
by writing to the national APDA office or by calling the toll free number
1-800-223-2732 or Fax 1-718-981-4399.
Educational Booklets
1. Basic Information about Parkinson¹s Disease,
4 page brochure (English, Chinese, Spanish)
2. Parkinson¹s Disease Handbook,
Symptoms, causes, treatment, 40 page booklet (English, German, Italian,
Portuguese, Spanish, Russian)
3. PD ³n² Me-Coping with Parkinson¹s disease,
    70 page booklet (English)
4. Be Active, A suggested exercise program
for people with Parkinson¹s disease,
25 page booklet (English, German, ltalian)
5. Be Independent, Equipment and suggestions for daily living activities, 32
page booklet (English, German, Italian, Spanish)
6. Speaking Effectively, Speech and swallowing problems in Parkinson¹s
disease, 33 page booklet
(English)
7. Good Nutrition in Parkinson¹s Disease,
26 page booklet (English,Italian, Swedish)
8. Young Parkinson¹s Handbook,
78 page booklet (English)
9. How to Start a Parkinson¹s Disease Support Group,
24 page booklet (English, Italian)
10. Aquatic Exercise for Parkinson¹s disease,
     20 page booklet for patients and their families (English)

Educational Supplements
Hospitalization, Helpful Hints, Living Will, Oral Health Care, The Family
Unit, Helping Your Partner, Nursing Homes, Long Term Care Insurance,
Recreation and Socialization in Parkinson¹s Disease,
Comtan Questions & Answers.Use of Comtan in the Treatment of Parkinson¹s
disease. PD and Emergency Room, Vision and Parkinson¹s Disease, Dopamine
Agonists.
Carelink
(A cooperative APDA - GSK project)
You can now contact the APDA Information and Referral Center closest to you
by dialing the toll free number 1-888-400-2732
APDA Worldwide Web Site
www.apdaparkinson.org for PD, I&R Centers, Chapters, Support Groups,
Education and Information Material, Meeting Dates, Publications, Medical
Abstracts, Video Library, Udall Bill, etc.

World Parkinson Disease Association Web Site
www.wpda.org/A source of world news updated weekly
The material contained herein concerning the research in the field of
Parkinson¹s disease and answers to readers questions are solely for the
information of the reader. It should not be used for treatment purposes, but
rather as a source for discussion with the patient¹s own physician.


Upcoming Symposia
Date    Location      Contact No.
2/9/03    Charlottesville, VA     434-982-4482
2/18/03    Tucson, AZ     520-326-5400
4/10/03    San Diego, CA     858-273-6763
4/13/03    Durham, NC     919-668-2938

								
To top