I am one of the nearly 1 million people in the United States living with Parkinson’s disease. There will be 90,000 more of us diagnosed each year. Parkinson’s disease is the second most common neurodegenerative disorder in the United States. I’m writing to ask for support in getting our government representatives onboard with supporting the National Plan to End Parkinson’s Act. Obviously I support this initiative as I am personally affected, but you should too – and here’s why.
Parkinson’s disease is different for every person who has it. Some people are minimally affected for several years; others experience a more rapid decline. I was diagnosed two and a half years ago, and so far, I have been fortunate.
I don’t know how my disease will progress, only that it will. My husband and I are expecting our first grandchild early next year, and I don’t know how long I will be well enough to help our daughter care for her baby. Our oldest daughter lives in Portland, and how I love having an adult child who is now a close friend! I do not want to become a burden to her. What if I outlive my husband? What then? What happens to those with late-stage Parkinson’s disease who live alone? What about the many rural Mainers who live far from medical care?
Parkinson’s is an almost impossible disease to hide. There are far too many symptoms to list here, but two of the most common are tremors and balance issues.
I, personally, live in fear of face-planting at a wedding or other gathering, and I have seen people steal glances at my trembling hands sometimes. As you know, Maine’s population leans toward the older side, and one of the problems of an aging population is social isolation. Add that to a reluctance to attend social events due to symptoms that are hard to hide, and you give a boost to one of our society’s most pressing problems, according to our surgeon general: loneliness.
On the plus side, I have met many truly wonderful and inspirational people on my Parkinson’s journey. They are warriors in every sense of the word, and this may sound odd, but they are an incredibly welcoming community. I am proud to know them, and I want us to find a cure for all of them and for the 90,000 others who will join us nationally next year.
Parkinson’s has a long reach – not only the person with the disease, but their families, caregivers and communities. The medical system has far too few “movement disorder specialists” (neurologists with further training in movement disorders, of which Parkinson’s is one) to handle the growing demand for their expertise. There is some truly exciting research currently being done. But we need to get across the finish line.
The National Plan to End Parkinson’s legislation would bring all parties to the same table – members of federal agencies that support research, care and services for Parkinson’s plus caregivers, patients and other nonfederal experts. It’s time. Please reach out to your representatives and urge them to support the National Plan to End Parkinson’s. Thank you from nearly a million Americans and me.
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