Week of February 15, 1999Parkinson's Disease is named after Dr. James Parkinson who in 1817 wrote an "Essay on the Shaking Palsy" which first defined the disease and it's characteristic tremor. Other symptoms of Parkinson's include slowness and difficulty of movement. While the mind usually remains unaffected, depression seems to accompany Parkinson's more often than it does other neurological disorders.
At the bottom of this page you will find a list of resources for Parkinson's patients, their families, and caregivers.
To start off this week, we hear from two men with Parkinson's who have one thing in common -- a love of dance. Phil Black has been a jazz and tap dance instructor for thirty years. Diagnosed nine years ago, he's still going strong. David Eckroff began to fulfill a lifelong dream of learning tap only after he was diagnosed. They explain how dance actually helps relieve their symptoms.
Then Dr. Goodwin interviews Dr. J. William Langston, founder and director of the Sunnyvale, CA-based Parkinson's Institute. Dedicated to finding a cure for the disease, the Institute got its start in the early 1980s when Dr. Langston, then at Stanford, noticed a number of young people coming into his emergency room with all the symptoms of advanced Parkinson's. It turned out that all were heroin addicts, and their problems could be traced to a tainted batch of the drug which caused the symptoms.
Dr. Langston was able to use this knowledge to construct the first laboratory model of Parkinson's disease. His latest research involves a massive study of twins, traced through World War II-era military databases, in an attempt to answer once and for all the question of whether Parkinson's is genetic or environmental in origin.
The results of the study showed that identical twins, who share the same genetic code, were no more likely than fraternal twins to both develop Parkinson's. Fraternal twins are genetically the same as ordinary siblings. Dr. Langston says this means that research can now concentrate on possible environmental causes of the disease.
Certain herbicides and pesticides are at the top of the list since exposure to them has proved a slightly increased risk factor for the disease. But there may be many causes, and as Dr. Goodwin and Dr. Langston point out, a genetic susceptibility may interact with environmental risks
The twins study also indicated that there may in fact be a strong genetic component to young-onset Parkinson's, usually defined as affecting people before the age of 50 and estimated to involve 3-15% of all Parkinson's patients.
For more information about the twins study, or any other research of the Parkinson's Institute, you can call the Institute at 1-800-786-2958 or on the Web at www.parkinsonsinstitute.org.
Next, Dr. Goodwin speaks with Dr. Stanley Fahn, a professor of neurology at Columbia University's College of Physicians and Surgeons and director of the Movement Disorder Group in New York City. Dr. Fahn reviews the current state of treatment for Parkinson's Disease.
While there are many treatment options, both surgical and pharmacological, these affect only the symptoms, not the degeneration of neurons that actually causes the disease. Dr. Fahn also emphasizes the importance of exercise and/or physical therapy for people with Parkinson's.
In the late 1960s, Dr. Fahn explains, L-dopa was first used to treat Parkinson's. But it had side effects that included nausea and vomiting, so Sinemet was developed and still remains the standard drug used for treatment, but usually its usefulness diminishes over time as patients develop additional symptoms. Before L-dopa, in the 1950s and 1960s, surgery for Parkinson's was the treatment of choice. Doctors targeted the part of the brain known as the thalamus.
With the advent of drug therapy, surgery almost died out, but has come back in the past five years as new and different techniques have been developed.
Drs. Fahn and Goodwin take a call from Debbie, a young-onset patient in Long Island. She discusses the importance of funding for Parkinson's research and asks about medication delivered in a "patch" form, like those for people quitting smoking, that would allow easier absorption of the drugs. Dr. Fahn explains that such a patch is essentially on its way and is now in clinical trials. He encourages participation in clinical trials for all patients who are able.
Joe from Cape Cod asks what kind of exercise is best for people with Parkinson's. Dr. Fahn replies that stretching is the most important.
Looking to the future Dr. Fahn sees research proceeding on two basic fronts--investigation into the causes of the disease, which will hopefully lead to a cure, and further refinement of our techniques for taking care of today's patients.
Next, Dr. Goodwin speaks with Joan Samuelson, a lawyer and founder of the Parkinson's Action Network, a nationwide advocacy group. She explains how currently about $50 per patient is spent by the Federal government on research for Parkinson's. This is about one-tenth of that spent on cancer.
Dr. Goodwin and Ms. Samuelson also discuss the controversy surrounding the use of fetal tissue transplants as treatment for those with Parkinson's. They explain what the procedure involves and explore some of the other developments in treatment practices. Ms. Samuelson also talks about how advocating on behalf of herself and others with the disease helped her to adjust to the reality of her condition.
You can contact the Parkinson's Action Network at 1-800-850-4726. They offer a resource guide to other Parkinson's related organizations. The number for their office in Washington, D.C. is 202-628-2079.
Here are some additional organizations to contact about Parkinson's Disease:
American Parkinson Disease Association
1-800-223-2732National Parkinson Foundation
1-800-327-4545
Parkinson's Disease Foundation
212-923-4700
United Parkinson's Foundation
312-733-1893
APDA Young Parkinson's Information and Referral Center
1-800-223-9776
These organizations can also help refer you to resources in your own community.
Finally, MSNBC's John Hockenberry shares his thoughts on Michael J. Fox's toughest role: spokesperson for Parkinson's Disease.
