It's one of the most debilitating diseases and one that many of its victims don't understand. Parkinson's disease affects more than a million Americans, most over 60. A recent Harris Poll indicates many of these people don't fee well-informed about treatments or the way the disease progresses.
According to the New York Times, there is a new website for those dealing with this devastating disease called Partners in Parkinson's. The article, written by Paula Span, mentions that this new resource is underwritten by the Michael J. Fox Foundation and 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. It contains a locator that allows users to find the closest movement disorder specialists.
A caution with the site is that research shows Parkinson's patients heal better with neurologists rather than general physicians. They survive longer, aren't as likely to fracture hips and tend to avoid nursing homes. "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."
Span says 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.
Furthermore, she states there's little 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. Dr. Okun adds: "encouraging people to seek out doctors who are interested and experienced in treating Parkinson's disease is a good thing."
For more information, be sure to visit Partners in Parkinson's to check out the helpful resources and information there. Or, if someone you love is living with Parkinson's and needs additional support, contact your local BrightStar Care office to learn more about the support we can provide.