Jackie VandenBerg wrote -
For me, the initial signs of Multiple System Atrophy (MSA) were subtle. My gait and balance were off at times. I spoke to my doctor about it, but the doctor couldn't make any diagnosis because the symptoms were so vague. As the symptoms increased to where my control over physical movement became difficult, my primary care doctor referred me to a neurologist. As is often the case, I was initially misdiagnosed as having Parkinson’s disease with the neurologist correcting his diagnosis to MSA during my second appointment. My extremely low blood pressure and the fact that I wasn't responding to Parkinson medication were the tip-offs. Since there is no cure, the disease has progressed and taken away many of the things I used to enjoy most. I rode a Harley Davidson for 10 years, and I can’t do that anymore. I live in upstate New York where there’s a lot of great hiking trails, but I can’t go on them anywhere near the way I used to. And I miss cross-country skiing.
Tom Humenick, my partner and caregiver, has been a tremendous help in finding ways to work around my condition and finding activities we can still enjoy. Tom says MSA can’t take away our appreciation of nature, and he finds places with accessible trails. This disease can’t rob us of our spirit and the fun we still have. We just love to laugh and MSA can’t take that away from us. MSA can’t take away friends and our appreciation of life. We never put off until tomorrow what we can do today – we always do it today.
We are so grateful for The MSA Coalition. Tom relies heavily on the support The MSA Coalition offers – the wealth of information, the volunteer-staffed hotlines, the webinars they produce – have really helped him to be effective in his caregiving. We also have experienced the overall value in the human connections The MSA Coalition provides. Tom and I have attended MSA conferences where we had the opportunity to meet others who have this disease. If it weren't for The MSA Coalition, not only would I not meet others who have the disease, I might never have met anyone who has even heard of it. This points to a major challenge in the fight against MSA - awareness. Part of The MSA Coalition’s mission is to educate doctors. This is something I see as crucial since MSA is far too often misdiagnosed. There are probably many people out there who have it and don’t know it. And that keeps them from getting the wonderful support Tom and I have received from The MSA Coalition. Additionally, The MSA Coalition funds reseach for finding a cure. These are the many reasons why I am asking you now to help The MSA Coalition with a financial contribution, and I greatly appreciate any amount you can give.
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