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Elvida 05-25-2019 08:56 PM

Multiple Systems Atrophy
My husband was diagnosed with Multiple Systems Atrophy in 2015, though, it took 5 years of neurologists to finally receive this awful diagnosis. He walks with a walker and my assistance and goes to physical and occupational therapies 3 days a week, but he continues to get weaker. His speech is very much affected, as only I can understand him and he has difficulties eating his breakfast, though, fine with dinner. This disease is attacking all his muscles and he is getting very depressed, understandably. The most difficult is that it has really affected his mind. The few people I have met with MSA don't seem to be affected as my husband is and I am told everyone is different with this disease.

He wakes up very confused, loud non stop talking, just repeat, repeat, repeat. It is so difficult and I am at a loss of what to do, this is the most difficult part for me. Later in the evening, especially after his physical therapy he is calmer, as I know he is tired, but every morning it is the same with the confusion and loud non stop talking. He never stops talking and it would be great if we could have a conversation, but we can't, he can talk 5 hours and sometimes I feel that he doesn't even take a breath. The doctors have no answers and it is just so difficult. I just don't know how to relax him, as he will not take an anxiety pill during this confused state in the morning.

I don't know how to deal with this disease. It is just so awful.

MSNik 05-26-2019 11:13 AM

Re: Multiple Systems Atrophy
Elvida, I am really sorry. I have known people with this horrible disease and you are right, it affects people differently.

Have you considered bringing in a home health care worker in the mornings so that you can take care of YOU? You will be no good to him if you don't get a break..maybe you could get out and meet a friend for coffee or go grocery shopping or just get a manicure if you had help. It sounds like your most frustrating time is in the morning, so find an agency who can send someone over first thing to help with getting him up and his breakfast in him.

That way you can enjoy his better hours during the afternoon.

This won't get easier and the only way to get through it is to make sure you are taking care of yourself. There is help out there; talk to your doctor and your local organizations to find out what is available.

Elvida 05-27-2019 08:26 AM

Re: Multiple Systems Atrophy
Thank you for responding to me. I know that I need some help, as the mornings are so stressing. I don't know why this is so difficult for me to do. I just have a really hard time making this move, as he gets so emotional when I mention it. I know I will just have to do as everything is going to get more difficult, I guess that's why I was just trying to handling as much as I can now. Did you know anyone with the morning confusion and non stop talking, with his speech affected, it's loud screeching all morning, which is so difficult. Thank you.

MSNik 05-27-2019 04:03 PM

Re: Multiple Systems Atrophy
My father recently passed from Parkinson's disease.....he had it for over 20 years and the last 5 were absolutely awful. My mother did EVERYTHING one can do- but in the end, wound up with him in a nursing home.

Before that, it was years of home health aides coming for 2 hours a day, then 2 hours, twice a day, then 8 hours a day...eventually we had a live in nurse- but it still wasn't good. As the disease progressed, my mom had to move him out. The first few weeks were awful, she felt guilty and cried constantly, but within 5 weeks, he had adjusted, she was sleeping through the night and not being pulled in 10 different directions all day and could actually enjoy sitting with him and being with him at the home.
As all PD patients, he progressed to being unable to eat and drink....and eventually started aspirating- a feeding tube was inserted and eventually pneumonia became an issue; he passed last month.

You have allot of time before all this happens, IF it happens, but start preparing now...find some help in the form of a home health aide especially for mornings; the last thing you want to do is be resentful.

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