The Parkinson's Action Network Forum in Washington D.C. is a two-day training program on government policy and issues pertaining to Parkinson's disease and other neurodegenerative diseases.
Speakers from the National Institutes of Health, National Institute of Neurological Disorders and Stroke and the Department of Defense prepare us for the third day of the event, Hill Day. That day, armed with information, our own personal stories, plus a good measure of confidence, we descend on Capitol Hill to advocate and raise awareness about the physical, emotional and financial toll of Parkinson's disease on the people with the disease and their family members. Parkinson's disease is afflicting younger people as well, many of them still raising families, yet unable to work because of their disability.
We asked our elected officials for increased funding for the NIH and the DOD veteran's program that studies Parkinson's disease and to permanently eliminate the Medicare therapy cap, which allows only $1,920 for occupational therapy and an additional $1,920 for both physical therapy and speech therapy combined.
Currently, legislators vote on this issue annually. Physical, occupational, and speech therapies are vital to everyday living for those who are challenged with neurodegenerative disease.
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Assistant State Director Cindy Carr of Port Royal and I met with Sen. Lindsay Graham, Sen. Tim Scott, and Rep. Mark Sanford. Our meetings were positive and encouraging.
Our legislators were welcoming and appreciative of our efforts to provide information that helps them to make knowledgeable policy decisions.
Hilton Head Island
Editor's Note: O'Neill is the S.C. director of the Parkinson's Action Network.