Marching Through Life With Parkinson’s

JANE E. BRODY
The New York Times - Dr. Karen Jaffe, an obstetrician-gynecologist in Cleveland, was only 48 when she learned she had Parkinson’s disease. Four years later, she continues to maintain a full-time medical and surgical practice, even performing ritual circumcisions.

“I’m doing everything I can to stay healthy,” she told me in an interview. “My medications and exercises control my tremor, so doing surgery is not a problem.”

For patients with Parkinson’s disease, like Dr. Jaffe, there still is no cure. But researchers have begun to make progress in identifying causes of the disease, and a new study promises to help identify better treatments.

Until then, many patients are getting by on grit and determination. In speaking recently with several of them, two common threads emerged: an initial unwillingness to believe or reveal the diagnosis, followed by acceptance and a determination to pursue whatever it takes to remain as healthy and functional as possible.

In addition to taking medication designed to replace the brain chemical, dopamine, that is diminished in this neurological disease, each person I spoke with is dedicated to regular, often vigorous physical activity that can minimize the disabilities caused by Parkinson’s.

One, David Wolf, 51, of Buffalo, has even taken up fencing, saying (in jest, I hope), “There’s nothing like running someone through with a sword to make your day.” Another, Rena Bulkin, 68, of Manhattan, goes to a gym several times a week to do aerobics, stretching and range-of-motion and balance exercises. “If I don’t work out, my symptoms are much worse,” she said.

Dr. Jaffe dances the tango and whacks a heavy punching bag to reduce her symptoms and enhance function. “The punching bag helps my arms and relieves my frustrations,” she said. “It feels so good to hit the thing.”

She also rides an exercise bike at low resistance and high speed — 80 to 90 revolutions a minute — an activity that was shown in studies at the Cleveland Clinic to significantly reduce arm tremor.

The Parkinson’s patients also emphasized the importance of having a physician who is both expert in the disease and willing to work with patients to find treatments that produce the most benefits with the fewest side effects.

Theirs is a lesson worth learning by the growing numbers of people with Parkinson’s and their caregivers. The sooner one comes to terms with the diagnosis and starts treatment, the less rapidly the disease is likely to worsen.

More Than a Movement Disorder

Parkinson’s disease is a slowly progressive neurodegenerative condition involving a significant loss of dopamine, a neurotransmitter produced in a section of the brain called the substantia nigra that helps to control movement and emotional responses.

While manifestations of the disease can vary widely from person to person, the most common physical symptoms include tremor, or shakiness or trembling in the hands, arms, legs, jaw and face; rigidity of the muscles; slowness of movement or difficulty starting to move; and problems with balance and coordination.

Other symptoms may include fatigue, depression, anxiety, irritability, restlessness, tingling, memory problems, slowed thinking, changes in body temperature, sweating and constipation.

Although the disease usually does not produce recognizable symptoms until the seventh decade or beyond, it sometimes affects much younger people like Dr. Jaffe, Mr. Wolf and the actor Michael J. Fox, 50. Although Dr. Jaffe said she can no longer play the piano — “My left hand can’t keep up with my right hand, and I wasn’t very good in the first place” — she was able to knit a number of cotton wraps that were sold to raise money for the Michael J. Fox Foundation for Parkinson’s Research.

The foundation, in partnership with industry, is sponsoring an international study of biological markers that can help monitor progression of the disease. Results of the study, called the Parkinson’s Progression Markers Initiative, are expected to facilitate the testing of new drugs that may slow or stop the disease in its tracks.

Dr. Kenneth Marek, a neurologist at Yale University and principal investigator for the biomarkers study, said in an interview, “We need a way to keep track of whether a medicine is working or not.” Because the disease progresses very slowly in some patients and rapidly in others, different treatments are likely to be more effective in some patients than in others.

He said, “A roadblock in developing new drugs has been the inability to predict what will happen over time.”

Dr. Jaffe's husband is participating in this study, as a control subject. Two other participants, Marty Bullock, 68, of Stillwater, Okla., and his wife, Gay Lyn, plan to drive 560 miles every three months to Houston for the next five years, to be prodded and poked to give blood, urine and spinal fluid samples for analysis.

“After my diagnosis, I looked for a research program to participate in,” said Mr. Bullock. “It’s my understanding that Parkinson’s disease doesn’t get any better, so I wanted to see if perhaps I can help benefit someone else in the future.”