While Parkinson Disease usually progresses slowly, eventually the most
basic daily routines may be affected — from socializing with friends and
enjoying normal relationships with family members to earning a living and
taking care of a home. These changes can be difficult to accept. Support
groups can help people cope with the disease emotionally. These groups can
also provide valuable information, advice, and experience to help people
with Parkinson Disease, their families, and their caregivers deal with a wide range of
issues, including locating doctors familiar with the disease and coping with
physical limitations. A list of national organizations that can help
patients locate support groups in their communities appears at the end of
this brochure. Individual or family counseling also may help people find
ways to cope with Parkinson Disease.
People with Parkinson Disease also can benefit from being proactive
and finding out as much as possible about the disease in order to alleviate
fear of the unknown and to take a positive role in maintaining their health.
Many people with Parkinson Disease continue to work either full- or part-time, although
eventually they may need to adjust their schedule and working environment to
cope with the disease.
National Institute of Neurological
Disorders and Stroke (NINDS)
National Institutes of Health
Brain Resources and Information Network
¿Do you need more information on
Parkinson Disease?
The NINDS and the National Institute of Mental Health
jointly support two national brain specimen banks. These banks supply
research scientists around the world with nervous system tissue from
patients with neurological and psychiatric disorders. They need tissue from
patients with Parkinson Disease so that scientists can study and understand the disorder.
Those who may be interested in donating should contact:
Rashed M. Nagra, Ph.D., Director
Human Brain and Spinal Fluid Resource Center
Neurology Research (127A) W. Los Angeles Healthcare Center
11301 Wilshire Boulevard, Building 212
Los Angeles, CA 90073
310-268-3536
Page: 310-636-5199
www.loni.ucla.edu/~nnrsb/NNRSB
Francine M. Benes, M.D., Ph.D., Director
Harvard Brain Tissue Resource Center
McLean Hospital
115 Mill Street
Belmont, MA 02478
617-855-2400
800-BRAIN BANK (272-4622) www.brainbank.mclean.org
Two other organizations also provide research
scientists with nervous system tissue from patients with neurological
disorders. Interested donors should write or call:
National Disease Research Interchange
1628 JFK Boulevard
8 Penn Center, 8th floor Philadelphia, PA 19103
215-557-7361
800-222-NDRI (6374) www.ndriresource.org
UM/NPF Brain Endowment Bank
University of Miami Dept. of Neurology
1501 N.W. 9th Avenue, Room 4013 (D 4-5)
Miami, FL 33136
305-243-6219
800-UM-BRAIN (862-7246)
The Mohammed Ali Parkinson Center at the Barrow
Neurological Institute in Phoenix, Arizona, has developed a national
registry of people with Parkinson Disease in order to help in the development of new
therapies and to allow researchers to quickly identify and notify people
about research studies for which they are eligible. Anyone diagnosed with
Parkinson Disease is eligible to take part in this registry. For more information, contact:
Some states, including California and Nebraska, also
have registries of people with Parkinson Disease.
People with Parkinson Disease who wish to help with research on
this disorder may be able to do so by participating in clinical studies
designed to learn more about the disease or to test potential new therapies.
Information about many such studies is available free of charge from the
Federal government's database of clinical trials,
clinicaltrials.gov.
For clinical trials taking place at the National
Institutes of Health, additional information is available from the following
office:
Patient Recruitment and Public Liaison
Office
Clinical Center
National Institutes of Health
Building 61, 10 Cloister Court
Bethesda, Maryland 20892-4754
800-411-1222 TTY: 301-594-9774 (local), 866-411-1010 (toll free) www.cc.nih.gov/ccc/prpl
For more information on neurological disorders or research programs
funded by the National Institute of Neurological Disorders and Stroke, contact
the Institute's Brain Resources and Information Network (BRAIN) at:
Information also is available from the following organizations:
American Parkinson Disease Association
135 Parkinson Avenue
Staten Island, NY 10305-1425 apda@apdaparkinson.org http://www.apdaparkinson.org
Tel: 718-981-8001 800-223-2732 Calif: 800-908-2732
Fax: 718-981-4399
Dedicated to funding Parkinson's disease research. Offers comprehensive
medical information and extensive public/professional education and
support services.
National Parkinson Foundation
1501 N.W. 9th Avenue
Bob Hope Road
Miami, FL 33136-1494 contact@parkinson.org http://www.parkinson.org
Tel: 305-243-6666 800-327-4545
Fax: 305-243-5595
Provides research, patient services, clinical studies, public and
professional education, and physician referrals at over 60 locations and
through a nationwide network of chapters and support groups.
Parkinson Alliance
P.O. Box 308
Kingston, NJ 08528-0308 admin@parkinsonalliance.org
http://www.parkinsonalliance.org
Tel: 609-688-0870 800-579-8440
Fax: 609-688-0875
Raises and distributes money for the most promising research leading to
a cure for Parkinson's disease. Partners with the Tuchman Foundation to
ensure that every dollar donated by individuals and all net proceeds of
events go directly to research. The Alliance is also devoted to
improving quality of life within the DBS-STN community through an
affiliated resource, www.DBS-STN.org.
Michael J. Fox Foundation for Parkinson's
Research
Grand Central Station
P.O. Box 4777
New York, NY 10163 http://www.michaeljfox.org
Tel: 212-509-0995
Dedicated to advancing a cure for Parkinson’s disease by identifying
promising research and raising funds for research support.
Parkinson's Action Network (PAN)
1025 Vermont Ave., NW
Suite 1120
Washington, DC 20005 info@parkinsonsaction.org
http://www.parkinsonsaction.org
Tel: 800-850-4726 202-638-4101
Fax: 202-638-7257
Non-profit education and advocacy organization that serves as a voice
for the Parkinson's community by fighting for promising research that
will produce effective treatments and a cure.
Parkinson's Disease Foundation (PDF)
1359 Broadway
Suite 1509
New York, NY 10018 info@pdf.org http://www.pdf.org
Tel: 212-923-4700 800-457-6676
Fax: 212-923-4778
National nonprofit organization that supports Parkinson's disease
research, patient education, and public advocacy programs.
Parkinson's Institute
1170 Morse Avenue
Sunnyvale, CA 94089-1605 http://www.thepi.org
Tel: 408-734-2800 800-786-2958
Fax: 408-734-8522
Non-profit organization conducting patient care and research activities
in the neurological specialty area of movement disorders.
Parkinson's Resource Organization
74-090 El Paseo
Suite 102
Palm Desert, CA 92260-4135 info@parkinsonsresource.org
http://www.parkinsonsresource.org
Tel: 760-773-5628 310-476-7030 877-775-4111
Fax: 760-773-9803
Helps families affected by Parkinson’s by offering emotional and
educational support programs, publishing a monthly newsletter about
quality of life and family issues, providing information and referral
services, promoting advocacy and public awareness, and providing respite
for family caregivers.
WE MOVE (Worldwide Education & Awareness for
Movement Disorders)
204 West 84th Street
New York, NY 10024 wemove@wemove.org http://www.wemove.org
Tel: 212-875-8312 866-546-3136
Fax: 212-875-8389
WE MOVE provides movement disorder information and educational materials
to physicians, patients, the media, and the public.
Bachmann-Strauss Dystonia & Parkinson
Foundation
Mt. Sinai Medical Center One Gustave L. Levy Place
P.O. Box 1490
New York, NY 10029 Bachmann.Strauss@mssm.edu
http://www.dystonia-parkinsons.org
Tel: 212-241-5614
Fax: 212-987-0662
Non-profit foundation that supports patients, family members,
researchers, clinicians, and volunteers working in partnership to find
better medical treatments and a cure for dystonia and Parkinson's
disease.
Glossary
anticholinergic drugs — drugs that interfere with production or
uptake of the neurotransmitter acetylcholine.
akinesia — trouble initiating or carrying out movements.
bradykinesia — gradual loss of spontaneous movement.
corpus striatum — a part of the brain that helps regulate motor
activities.
deep brain stimulation — a treatment that uses an electrode
implanted into part of the brain to stimulate it in a way that
temporarily inactivates some of the signals it produces.
dopamine — a chemical messenger, deficient in the brains of
Parkinson Disease
patients, that transmits impulses from one nerve cell to another.
dyskinesias — abnormal involuntary twisting and writhing movements
that can result from long-term use of high doses of levodopa.
dysphagia — difficulty swallowing.
festination — a symptom characterized by small, quick, forward steps.
myoclonus — muscular jerks.
on-off effect — a change in the patient's condition, with sometimes
rapid fluctuations between uncontrolled movements and normal movement,
usually occurring after long-term use of levodopa and probably caused by
changes in the ability to respond to this drug.
orthostatic hypotension — a sudden drop in
blood pressure when a person stands up from a lying-down position. It
may cause dizziness, lightheadedness, and, in extreme cases, loss of
balance or fainting.
pallidotomy — a surgical procedure in which a part of the brain
called the globus pallidus is lesioned in order to improve symptoms of
tremor, rigidity, and bradykinesia.
parkinsonian gait — a characteristic way of walking that includes a
tendency to lean forward; small, quick steps as if hurrying forward (called
festination); and reduced swinging of the arms.
parkinsonism — a term referring to a group of conditions that are
characterized by four typical symptoms—tremor, rigidity, postural
instability, and bradykinesia.
"Parkinson's-plus" — a group of diseases that includes corticobasal
degeneration, progressive supranuclear palsy, and
multiple system atrophy.
These diseases cause symptoms like those of Parkinson Disease in addition to other
symptoms.
postural instability — impaired balance that causes a tendency to
lean forward or backward and to fall easily.
rigidity — a symptom of the disease in which muscles feel stiff and
display resistance to movement even when another person tries to move
the affected part of the body, such as an arm.
secondary parkinsonism — any
condition with symptoms that resemble those of Parkinson Disease but which result from
other causes.
substantia nigra — movement-control center in the brain where loss
of dopamine-producing nerve cells triggers the symptoms of Parkinson
Disease;
substantia nigra means "black substance," so called because the cells in
this area are dark.
thalamotomy — a procedure in which a portion of the brain's thalamus
is surgically destroyed, usually reducing tremors.
tremor — shakiness or trembling, often in a hand, which in
Parkinson Disease is
usually most apparent when the affected part is at rest.
wearing-off effect — the tendency, following long-term levodopa
treatment, for each dose of the drug to be effective for shorter and
shorter periods.
"Parkinson's Disease: Hope Through Research," NINDS. Publication date
January 2006.
Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
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