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Wednesday, March 29, 2000

Group seeks Parkinson's specialist

Sure, there are support groups and yes, there are organizations, but the 7,000 or so Mainers who have Parkinson's disease don't have a full-time doctor who specializes in the illness.

Slowly, two groups are working to change that.

The Maine Parkinson Society and the Maine chapter of the American Parkinson Disease Association have filed to get a grant from the national association to open an information and referral center in the state – a first step toward attracting a movement disorder specialist.

"Right now, people have to go to Boston" to see such a specialist, said Karen Bardo, the vice president of the Maine Parkinson Society.

Ivan Suzman, a Parkinson's disease patient who lives in Portland, said Maine and Massachusetts are different worlds when it comes to the disease.

"In Boston, suddenly you have five or six nurses – Parkinson's pain nurses, other nurses, you have Parkinson's social workers and Parkinson's doctors, five or six or seven of them in Boston University alone."

In Maine, he said, there's nothing.

Bardo and the president of the Maine chapter of the national organization, Carl Barker, also hope that the center will help raise awareness of Parkinson's disease.

The disease, which causes tremors, rigid muscles and weakness, has become higher profile in recent years because Janet Reno, the attorney general, and Michael J. Fox, the actor, have been diagnosed with it.

On April 1 – the first day of Parkinson's Disease Awareness Month – the disease will be the subject of a symposium in Augusta.

The conference, from 9 a.m. until 1 p.m. at the Senator Inn, is open to anyone who wants to attend, and will cost $10 per person. Two doctors will speak. One will discuss surgical treatments for Parkinson's, the other will talk about medical therapies.

Frequently, the disease can be treated with medication.

Suzman, who developed Parkinson's when he was about 35 and was diagnosed when he was 39, said he wants to let people know about the disease.

Suzman, who just turned 50, has testified before Congress about Parkinson's. His case is unusual because people usually do not develop symptoms of Parkinson's until they are older – generally in their 60s.

"There are very many undiagnosed people who don't even know that they have something that could be improved with medication, especially the elderly," he said. "There is so much acceptance of shaking in the elderly."


By JOSHUA L. WEINSTEIN
Staff Writer Joshua L. Weinstein can be contacted at 791-6368 or at:
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