ROANOKE TIMES
Copyright (c) 1996, Roanoke Times
DATE: Tuesday, January 2, 1996 TAG: 9601020137
SECTION: EXTRA PAGE: 1 EDITION: METRO
COLUMN: Personal Health
SOURCE: JANE BRODY
When Attorney General Janet Reno announced last month that she had Parkinson's disease, she joined an estimated 500,000 to 1 million Americans with this still-mysterious neurological disorder. Each year, about 50,000 people in this country - most of them over 50 - receive a similar diagnosis, based on the presence of symptoms characteristic of the disease and an inability to find any other explanation for them.
Parkinson's disease results from a progressive loss of cells in the brain's motor control center, the substantia nigra. These cells produce a substance called dopamine that transmits nerve messages crucial to normal, fluid movements. Without sufficient dopamine, patients commonly develop tremors, rigid muscles, difficulty in initiating movement, slowness of movement, a stooped posture, a shuffling gait, loss of balance and sometimes a slurring of speech.
Symptoms are usually minimal at first - Reno's current symptom is a tremor in her left hand - but gradually get worse over the years. In addition to physical symptoms, depression afflicts some patients - depression that goes beyond what would be expected after receiving the bad news of the diagnosis. And one in three of Parkinson's patients will eventually develop Alzheimer's disease, a rate three times that found in the general population of elderly people.
Parkinson's disease is chronic, progressive and incurable. When Reno announced her condition, she expressed confidence in her continued ability to perform her job and, with the aid of medications and following a regimen of self care, to remain a vital and useful individual for many years to come. There are a growing number of drugs and still-experimental surgical treatments to slow the progress of the disease and reverse or at least temper many of its symptoms. But Reno's attitude may very well be her best weapon.
My aunt, Ruth Tischler, now in her upper 80s, has had Parkinson's disease for more than 20 years. The diagnosis did not stop this Brooklyn-born dynamo from traveling abroad, attending cultural events and going on shopping expeditions that would exhaust a healthy person half her age.
At 75, nearly 10 years after her diagnosis, she studied intensively with her rabbi and, before a large and admiring audience, joyously celebrated her Bat Mitzvah, a rite of passage in Judaism that she had missed as a youngster. At 85, though quite deformed by her disease, she gave herself a birthday party attended by friends and family who were envious of her indomitable spirit.
A neighbor and friend in her early 50s whose Parkinson's disease was diagnosed just last summer at first became seriously depressed by the prospect of a premature and progressive loss of her ability to continue her work as a psychotherapist, sculptor and author. But with the help of medication and counseling and the support of a loving family and friends, she has shed the crippling yolk of depression and returned to her beloved pursuits, although at a less frenetic pace.
``I look around me at people I know with AIDS and cancer, and I say to myself, at least what I have isn't fatal,'' she said the other day. She is fast recovering her infectious laugh, wit and enthusiasm for life and learning to enjoy the many things she can do, instead of focusing on future disabilities.
The primary treatment for Parkinson's is levodopa, or l-dopa, which is converted to dopamine in the brain. Unfortunately, l-dopa tends to lose effectiveness after three to five years, so its use is often delayed and modifications made to keep it active longer. There are also now several drugs that can suppress different symptoms of Parkinson's and at least one drug, Eldepryl (selegiline), that may slow its progression. Still other drugs are under study. Though not yet proved, there are indications that high doses of vitamin E (400 to 1,000 International Units daily) may also delay the progress of the disease.
Surgical possibilities include computer-guided stereotactic surgery in the brain to relieve tremor, a burning out of hyperactive neurons in an area of the brain called the pallidum (pallidotomy) and transplants of fetal brain tissue.
For more information
There are more than 600 Parkinson's disease support groups around the country. To find one near you, write to Parkinson Support Groups of America, 11376 Cherry Hill Rd., Apt. 204, Beltsville, Md. 20705, or telephone (301) 937-1545.
A listing of support groups is also available from the National Parkinson Foundation at 1501 N.W. Ninth Ave., Miami, Fla. 33136, which can be reached at (800) 327-4545. The foundation provides free educational materials, information about medications and continuing research, help with social and psychological problems and referrals to doctors and clinics around the nation.
The American Parkinson Disease Association supplies free booklets in several languages dealing with matters like daily living activities, exercise and speech and mobility aids. Its address is 1250 Hylan Blvd., Suite 4B, Staten Island, N.Y. 10305 or call (800) 223-2732.
Useful booklets and books include these:
``The Parkinson Patient at Home,'' a booklet that provides information on daily living matters like preventing falls, proper diet and exercise. To obtain the booklet, write to the Parkinson's Disease Foundation at Columbia-Presbyterian Medical Center, William Black Medical Research Building, 650 W. 168th St., New York, N.Y. 10032.
``Parkinson's Disease,'' a 16-page booklet prepared in 1993 by the Harvard Health Letter, covers symptoms, diagnosis, medications, surgery and information for care givers. It is available for $6.50 from Department PD, P.O. Box 380, Boston, Mass. 02117.
``Parkinson's Disease: The Complete Guide for Patients and Caregivers'' by Dr. Abraham Lieberman and Frank L. Williams, published by Fireside Books, Simon & Schuster (1993, $11).
``Parkinson's: A Patient's View'' by Sidney Dorros (1992, $15.95), available from the publisher, Seven Locks Press, P.O. Box 68, Arlington, Va. 22210.
``Parkinson's Disease Update,'' a periodical ($40 for 12 issues, $75 for 24). Write to P.O. Box 24622, Philadelphia, Pa. 19111.
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