Does anyone have a loved one with MSA (multiple systems atrophy)?

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Husband recently diagnosed with this terminal disease and I'm struggling to wrap my brain around it.

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Fromtheheart,
You are in my thoughts.
Debbie
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Thanks to all who responded to our family's latest challenge, MSA. Dbryn, will you give me your email address? I would like to talk to you more about this. Pam, I will check out that web site. And mwb, thank you for your honest experience. My husband is 76. He was diagnosed 4 years ago with PD, but had that changed to MSA last fall. He is in a nursing home, cannot walk or talk and is on ground foods and thickened liquids. Only has limited use of one hand. Becoming very discouraged. Oh dear.
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There are clinical trials that offer hope. Go clinicaltrials.gov and do a search.
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Hello, my husband age 63 was Dx 4 years ago with MSA.
I will be happy to share our journey with you. Rick has not progressed as rapidly as some research suggests. We have some days that are better than others. I hope you find comfort in that. Again, please feel free to email me. I spent the first few months reading and crying, not always in that order. The unknown was overwhelming and scarey.
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My father was diagnosed with a specific form of MSA - olivopontocerebella atrophy (OPCA). We had a very hard time arriving at that diagnosis because his symptoms were so varied. Falling a lot, cold all the time, a specific type of gait, tremors that didn't look like Parkinsons' Disease. When he started to lose his ability to speak clearly and swallow, that is when they were able to pinpoint the specific disease. He died approximately 6 months after his diagnosis. He was 84 when he passed away of pneumonia - probably from aspiration.

I don't know what to tell you. Find a neurologist that specializes in movement disorders. It's been 4 years since my father passed. They tried some Parkinsons medications on him which helped a bit.

I obviously don't know you or your husband's age or symptoms. My suggestion might be difficult to hear at this point. You and your husband should discuss how much care he wants to receive as the disease progresses. Take a look at 5 Wishes (http://www.agingwithdignity.org/five-wishes.php).

I have to admit that, while we were grateful for the diagnosis by the neurology specialist, I was frustrated at her optimism. I would have preferred to hear that we would ultimately have to make a decision about a feeding tube, for example. Instead she told my dad that he would be around for the next St. Patrick's Day.(This was March 2011 - he died at the end of April 2011.)

Blessings to you........
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