Epilepsia, crisis convulsivas

Parkinson Disease

 

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  Coping With Parkinson Disease

 

 

How Can People Cope with Parkinson's Disease?

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

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What Can I Do to Help?

 

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:

Parkinson's Disease Registry
500 W. Thomas Rd., Suite 720
Phoenix, Arizona 85013
info@maprc.com
602-406-6315
877-287-7122 (toll free)
www.maprc.com/home/info/registry.aspx

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

A good source for finding clinical trials specifically on Parkinson Disease is the www.PDtrials.org web site, which lists studies sponsored by the National Institutes of Health and other federal agencies, as well as private industry and institutions at locations across the United States.  This resource is sponsored by the Parkinson’s Disease Foundation in collaboration with the American Parkinson Disease Association, the Parkinson’s Action Network, the Parkinson Alliance, the Michael J. Fox Foundation for Parkinson’s Research, the National Parkinson Foundation, WE MOVE, and the NINDS.

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

 


 Where can I get more information?
 

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:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov
 

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. 

  • dementia — loss of intellectual abilities.

  • 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.

NIH Publication No. 06-139

Back to Parkinson's Disease Information Page



 

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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