From the New York Times July 28, 2014
– Because more than a million Americans, most over 60, have Parkinson’s disease, and because a recent Harris Poll survey indicates that many of them don’t feel well-informed about treatments or the way the disease progresses, let me pass along a new website called Partners in Parkinson’s.
Underwritten by the Michael J. Fox Foundation and the pharmaceutical firm AbbVie, it offers information on the disease and its symptoms, explains how patients and caregivers can better cope with its effects, and provides sources of medical and other help.
The site includes a locator — drawn from the membership list of the International Parkinson and Movement Disorder Society — that helps users find the closest movement disorder specialists.
One caution here: Research has shown that Parkinson’s patients fare better when treated by neurologists rather than general physicians. They survive longer, are less likely to fracture their hips and are less likely to be placed in nursing homes.
But does seeing a movement disorder specialist — who has additional training in Parkinson’s and related diseases and is usually affiliated with a major teaching hospital — provide additional benefits beyond treatment by a neurologist?
“Nobody really knows how much more seeing a super-specialist will make a difference because there are so few of us,” said Michael Okun, who is one of those super-specialists — a neurologist at the University of Florida Center for Movement Disorders and Neurorestoration, and medical director of the National Parkinson Foundation. “We all believe it in our hearts, but we need the data to support it and I haven’t seen a lot yet.”
Research underway in the Netherlands and a large longitudinal study being conducted at 20 medical centers in this country may help answer that question.
Meanwhile, there’s no standardized course of study or credentialing process to become a movement disorder specialist, or accrediting body that polices who can use that title. And there’s scant funding for fellowships to train doctors who want to specialize in Parkinson’s — a disturbing situation given the rising numbers of patients as the population ages.
Still, Dr. Okun said, “encouraging people to seek out doctors who are interested and experienced in treating Parkinson’s disease is a good thing.”
Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”