American Women's Club of Hamburg
Parkinson Syndrome
by Maria R
Originally published in Currents Summer 1999
Published website May 2002
I will never forget the day I found out I had Parkinson Syndrome.
After going through so many tests from so many different doctors, you would think I would be well prepared for the diagnosis. But you are never prepared for such news. The shock was enormous. For days afterwards, I was upset and uneasy.
Months later, I went to a clinic that specializes in Parkinson Syndrome. During my four week stay, I was forced to confront my illness. In order to cope with it, I had to learn more about Parkinson. I cried a lot. Self pity and angst mixed together and built up within me. Despite the doctors' warnings not to compare my situation with other patients, I could not help but do so. I was depressed and helpless. The town where the clinic was located and its surroundings were lovely, but held no pleasure for me.
Like so many other patients, I kept asking, "Why, why me?" A question without an answer. In the beginning, the nights were unbearable. In the quiet of the night, in my mind's eye, I would see the other patients before me and wonder how they could accept their fate. A fate that I now shared with them. Against my will, I reluctantly took part in therapy sessions. I had plenty of free time, but I only wanted to read or write. There was no desire to undertake other activities.
After the second week, I started to regularly take the recommended medicine and my anger started to subside. I realized I had lost the war within myself. Only through discipline, could I learn how to accept this illness and lead a normal life.
My two adult sons were informed about my situation. They could only help me by giving me the feeling that despite everything, they still loved me. By the end of my stay at the clinic, I was actually able to talk to other patients and take part in activities. It was easy to say good-bye to the clinic. I was so happy to go home. With lots of patience and support, my husband had stood by me through all my anxieties. I knew I could count on his support. I was certain about one other thing; a new and unexpected life awaited me.
Every visit to the neurologist, every pill that I have to take, remains an ordeal. I am left with the hope that the illness will not progress too fast. I am skeptical with every change in medication. When I am tired in the morning, or when I have the feeling that I do not move as fast as usual, I get aggravated. Not to be able to move about as freely as before, hurts. Besides taking medicines, I do what every other normal person does, except now I know why I must, for example, do exercises and walk. I manage to lead a happy life.
Everyone who is afflicted with Parkinson's has the wish that scientists will continue making progress and that, in the future, this chronic illness can be cured.
The above is part of an article I wrote for the book entitled "Parkinson - na und?!" (Parkinson - so what?) This book is available through the Parkinson Klinik in Bad Nauheim, tel. (06032) 78 10.
Websites for Information on Parkinson Syndrome
Websites in German
Websites in English
- http://www.parkinson.org/
The National Parkinson Foundation (NPF)
1501 Northwest Ninth Avenue
Bob Hope Road
Miami, FL 33136
800-327-4545 (Voice - Toll-free)
305-243-6666 (Voice)
305-547-6666 (Voice)
305-243-4403 (FAX)
e-mail: jpearson@parkinson.org
(from http://www.healthfinder.gov/orgs/HR0282.htm): "The National Parkinson Foundation (NPF), founded in 1957, provides answers to patients and their families on problems relating to Parkinson's disease and maintains the Bob Hope National Parkinson Research and Rehabilitation Institute, devoted to the diagnosis, treatment, and rehabilitation of Parkinsonism. Physical, speech, and occupational therapies are available at the Institute on an outpatient basis. NPF also conducts research in the cause and possible cure of the disease. NPF sponsors a variety of educational programs, including a national awareness program designed to explain the workings of the Institute and to help the public understand the nature of Parkinson's disease. Its toll-free number is for information on the disease, publications, and physician referrals."
- http://www.apdaparkinson.org/
The American Parkinson Disease Association, Inc. (APDA)
1250 Hylan Boulevard, Suite 4B
Staten Island, NY 10305-1946
Tel: (718) 981-8001
Tel: 1-800-223-2732
Fax: (718) 981-4399
e-mail: info@apdaparkinson.org
(from http://www.healthfinder.gov/orgs/HR0190.htm): "The American Parkinson Disease Association (APDA) was established in 1961 to provide information about the various services available to patients with Parkinson's disease and to make funds available for research in new drug therapies and to find a cure. The Association maintains 58 information and referral centers. The centers also provide catalogs and information concerning health services in their areas, the availability of physicians experienced with the disease, and updated information on new medications. The Association awards fellowships that fund the work of senior medical researchers. APDA's support is dependent on contributions. APDA has 65 fundraising chapters and over 800 support groups nationwide."
- http://www.pdf.org/index.cfm
The Parkinson's Disease Foundation (PDF)
William Black Medical Research Building
Columbia Presbyterian Med. Ctr., 710 W. 168th St.
New York, NY 10032-9982
800-457-6676 (Voice - Toll-free)
212-923-4700 (Voice)
212-923-4778 (FAX)
e-mail: info@pdf.org
(from http://www.healthfinder.gov/orgs/HR0781.htm): "The Parkinson's Disease Foundation (PDF), founded in 1957, is dedicated to research into the cause, prevention, treatment, and cure of Parkinson's disease and related conditions. The PDF stimulates research by maintaining laboratories and granting postdoctoral and student fellowships. The Foundation has established a Brain Bank where brains donated by deceased Parkinson patients are studied. The PDF also conducts symposia for neurologists. The Foundation serves as a source of information to patients and physicians on all aspects of Parkinson's disease."
- http://www.parkinsonsresource.org/navpage.html
Parkinsons Resource Organization
74-090 El Paseo, Suite 102
Palm Desert, CA 92260-4135
Telephone: 760-773-5628 or
toll-free 877-775-4111
FAX: 760-773-9803
e-mail: info@parkinsonsresource.org
(from http://www.healthfinder.gov/orgs/HR3427.htm): "A non profit organization that offers information about Parkinson's disease, funds for respite care, and emotional comfort to families of people with Parkinson's. The organization provides these services through a network of support groups, information and referral, and a monthly newsletter."
Books on Parkinson Syndrome
These books can be ordered directly from Amazon.de. Simply click on the image of the book cover (below), and you will be taken directly to the book's page at the Amazon.de site. The page will open in a new browser window. If you put the book into your "shopping basket" and order it right then, AWC will receive a 15% rebate on the price of the book (thank you!).
Books in German
Evelyn Ludwig, Renate Annecke, Elke Löbring, Isabel Fritsch, Der große TRIAS Ratgeber zur Parkinson-Krankheit, TRIAS, ISBN 3893735879, 184 pages, 2000.
Manfred Gerlach, Heinz Reichmann, Peter Riederer, Die Parkinson-Krankheit. Grundlagen, Klinik, Therapie, Springer-Verlag Wien New York, ISBN 3211835407, Hardbound, 298 pages, 2001.
Horst Przuntek, Thomas Müller, Adjuvante nichtmedikamentöse Therapieansätze bei Morbus Parkinson, Steinkopff Verlag, ISBN 3798512582, 134 pages, 2000.
Reinhard Hinterleitner, Mein Leben mit der Parkinson-Krankheit: Diagnose, Umgang, Bewältigung, Urban & Fischer Verlag, ISBN 3437474006, 188 pages, 2001, 3. Aufl.
Books in English
Lucien A. Cote, Lola L. Sprinzeles, Robin Elliott, Parkinson's Disease and Quality of Life, Haworth Press, ISBN 0789008106, 199 pages, 2000.
William J. Weiner, Lisa M. Shulman, Anthony E. Lang, Parkinson's Disease : A Complete Guide for Patients and Families (Johns Hopkins Press Health Book), Johns Hopkins University Press, ISBN 0801865565, 256 pages, 2001.
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