Main Menu · Search ·Current Issue ·Contact ·Archives ·Centennial ·Letters to the Editor ·FAQs
An Unsteady GaitCoping with the uncertainties of Parkinson's diseaseby John F. Lauerman
|
As a corporate and business lawyer, Bob Silver, J.D. '60, formed close bonds with many of his clients. But it was not until he began to suffer from chronic medical problems that he found just how close those relationships could be. A little more than 10 years ago, Smith began to slow down. His confident walk turned into a bowed-head shuffle. He had difficulty pulling on his coat, getting to the ball on the tennis court, or raising his voice. "My doctor told me it was probably nothing," he recalls. "But my clients noticed. On at least two occasions, clients came to me and said 'Are you sick? Are you okay?'"
At the age of 55, Silver found that he had Parkinson's disease, a neurological disorder that affects about one of every hundred Americans older than 65. The disease erodes the ability to do things we take for granted: walking, talking, writing, almost anything that demands coordination. In about four out of five cases, however, Parkinson's leaves the mind unscathed; although they may suffer bouts of fatigue, people with the disease think as clearly as ever.
"Although Parkinson's is more common among older people, a number of patients are diagnosed in their fifties, sometimes even in their late forties," says David Standaert '82, M.D., Ph.D., assistant professor of neurology at Massachusetts General Hospital. "And a lot of those people continue to work."
The question for many people who suffer from Parkinson's disease is what--and when--do you tell clients, employers, co-workers, or partners? And since professional and personal lives so often intersect, what do you tell friends, even family? For Bob and Margery Silver, the decision "was very hard," recalls Margery Silver, Ed.D. '82. A psychologist specializing in elder issues, Silver had treated many people with Parkinson's before her husband was diagnosed. "My knowledge of the effects of the disease helped us both immeasurably," she says. "But I confided only in two close friends. Otherwise, we kept it to ourselves for almost four years."
There was a time when parkinson's disease usually meant the end of productive life. The disease diminishes and then destroys the body's ability to make dopamine, a neurotransmitter that carries the brain's messages to muscles. Losing dopamine is like taking the pony out of the Pony Express: without treatment, the brain-muscle connection is all but severed, and patients become "frozen," their minds unable to move their rigid muscles.
The era of modern treatment began in 1969, with the introduction of levodopa, a drug the body converts into dopamine. When patients start taking it, it often works wonders: the body can still make enough dopamine to meet fluctuating demands, because the drug is providing a steady baseline supply of raw material. But as the disease progresses and dopamine production falters, the treatment has side effects: excessive amounts of levodopa cause involuntary movement, called dyskinesia. As drug levels wane, arms and legs stiffen, the face regains a mask-like appearance, and the voice fades away.
Medical advances continue to make Parkinson's disease a more manageable condition. Long-acting levodopa has been available for about five years. Two new drugs, pramipexole and ropinerol, can help smooth out the rise and fall of dopamine concentrations and diminish side effects. Other new drugs, like tolcapone, slow the breakdown of levodopa so that drug levels stay relatively steady. Dyskinesia can be relieved with pallidotomy, a procedure in which a small portion of the brain's frontal lobe is removed or deactivated. And there are high hopes that successful transplantation of dopamine-producing cells will make Parkinsonian symptoms a thing of the past.
"The old drugs, like levodopa, created a tremendous impact, and the newer treatments are extremely promising," says David Standaert. "But patients still have problems with fluctuating drug levels leading to dyskinesia and rigidity, and that makes their lives unpredictable. For many people, those side effects represent a significant barrier to staying at work, and perhaps to going out at all."
Or as Ken Bernstein, founder of a Parkinson's disease support group in Boston, says: "There's sort of a Jekyll and Hyde thing going on--times when you're able to do things, and times when you can't. What I've seen is that people with Parkinson's tend to disappear."
Over the years, ken bernstein has heard many Parkinsonian people disclose to his group what they fear to tell both friends and employers. He watches as they slowly accept the idea that their disease is here to stay, and will probably worsen with time. Dentists or surgeons with only slight tremors may not be able to continue working, while secretaries or teachers with much more severe symptoms may be able to fulfill their duties for years.
"People with Parkinson's may want to conceal the things that they're not able to do," says Margery Silver, who is a clinical instructor in psychology practicing at Beth Israel-Deaconess Medical Center and associate director of the New England Centenarians Study. "And because their symptoms aren't there all the time, they can be pretty successful. The hard part is that, as a result, they don't get the support and understanding they need. I felt very isolated during the four years I didn't tell my friends and co-workers [about my husband], and it must have been even worse for him."
As more people become aware of its treatability, attitudes toward Parkinson's disease may begin to change. David Standaert points to George Andes, a dean emeritus at Worcester Academy who learned he had Parkinson's disease 16 years ago. Andes kept the news from no one, and continued to work until his full retirement in 1996. "You could say that I was able to continue because I was the boss," the 64-year-old Andes says. "But I never missed a day of work because of Parkinson's. The faculty knew all about it, and they held my feet to the fire. I was expected to do everything I ever did."
In addition, many people don't realize that the Americans with Disabilities Act obligates employers to make accommodations for workers with chronic conditions. This may include part-time work hours, special office equipment, and other aids. With such assistance, and some open-mindedness from the public, people like Bob Silver can keep their professional skills alive while acknowledging they have problems that may interfere with work from time to time.
"I think my attempt to postpone giving up the full practice of law probably wasn't worth it," Silver says. "It's better to open up, dispel doubt, and allow people to adjust their image of what you can do. I have a couple of really good clients who don't mind waiting the extra time it takes me to prepare the documents they need. I've been honest with them, and they've been really grateful. When people understand what's going on, they're wonderful."