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Storylady

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1 reviews

Review for Multiple System Atrophy Coalition, Charlotte, NC, USA

Rating: 5 stars  

My husband was increasingly ill for 15 years and we couldn't get a diagnosis despite trekking from one specialist to another to another to another. When we were told to see a neurologist who specialized in movement disorders because one doctor guessed he might have Parkinson's. We made an appointment after asking around a lot, doing a lot of research, and talking to many generous people associated with various PD disease support groups. After having a couple appointments with that neurologist she told us she thought PD was not the right diagnosis but that MSA was. That, of course, led to another round of research and we were more devastated then we had yet been.
I went online at facebook and searched for MSA and discovered the MSA coalition. I applied for membership on both open and closed groups dedicated to supporting and informing people with MSA and we were accepted into membership.
FINALLY, we had found people who knew what we were talking about! People who were incredibly warm and accepting and informative and supportive. We found a community of people suffering both as people with MSA and caregivers. They didn't make the terminal journey easy or pleasant but they made it not lonely. We had been lonely for 15 years. The MSA Coalition people were responsive, filled with understanding and useful suggestions and companions on our sad journey.
I can't thank them enough for what they gave us doing his last few years. I'm alone now, grieving, and still not alone because MSA Coalition continues to be available with advice, consolation, good suggestions, kindness, warmth, inclusiveness. . . they are wonderful people.
I will continue to donate to them as long as I can.

Role:  Client Served