What can I expect with Parkinson's/MSA? How do you cope as a caregiver?

Orthostatic hypotension...
sudden drop of blood pressure when getting up.

My mother had MSA; it was horrible. She was a recovering alcoholic (they say alcoholism plays a huge part) and when she started slurring her words, we thought she had just gone back to drinking. When she saw her PCP, he insinuated she was trying to get pain meds - definitely not her intention at all. I really don't know how long it went from beginning to end, but I believe her first symptoms were insomnia and that, from beginning to end, it was about 3 years. Keep in mind, the disease tends to progress more quickly with women that it does with men. About mid-stage, my mom lost the ability to walk because her BP would drop when she stood up (cant remember the medical term for it offhand); she passed out one day after standing up from the toilet and my husband and I carried her out of her home and to the hospital. That was when she was diagnosed - and never returned home again.

She passed away about a year and a half later in a nursing home. In later stages, she could only eat soft food and had difficulties swallowing - oftentimes, a reason for death is choking, so beware of that. She was constantly thirsty and had dry mouth, no matter how much she drank - I'm certain that messed with her electrolytes. She was constantly in pain because of the tightening of her tendons and rigidity; her hands became deformed and she needed braces to try to keep them straight. Everything hurt; she was on a pretty heavy dose of morphine - it really didn't help much, just took the edge off so she could sleep - sometimes the pain would exhaust her. Many have bouts of unexplained crying or laughter; unfortunately, she cried a lot. She had horrible bed sores because she was unable to move or even get to the bathroom herself.

If you'd ask me what eventually took her, I'd have to say I don't really know - she had a catheter and I could see the changes in her urine and I believe her kidneys were shutting down.... hence the "multiple systems atrophy". She began sleeping more and more - sometimes for a day or two and then she'd suddenly pull out of it. The last time, she was down for 7 days straight - no food and no water, and she passed at a very frail 85 lbs.

I couldn't have possibly been a caregiver for her, although I wanted to. The level of care she required far exceeded my abilities; also, at that time, I had two teenage kids at home who had many activities between them. I hope you have the ability to have a caregiver in the home; but, if not, I don't know how you do it. Do the best you can, but be honest with yourself to determine when you just can't do it anymore. The time will come, just based on the level of care this disease demands. The rigidity and pain adds complexity that many others don't. My heart goes out to you - feel free to message me anytime.

I think you need a neurologist who is a Movement Disorder Specialist because it sounds like you don't have one now for your husband. It's my understanding that the Parkinsonism diseases like MSA, Multiple System Atrophy, are often misdiagnosed at first as Parkinson's. I guess it could happen that someone has both PD and MSA but I've never heard of that happening in my experience with Parkinson's. You should find a support group for each of you. Things don't get a lot better with these type of diagnoses. Even if the therapy isn't improving his situation much it may be helping to maintain his current level longer. There's no reason to think of yourself as a bad caregiver. Not all patients are good patients. How could he stop you from getting whatever help is needed? Yell at you and complain? Does that happen anyhow? Get the support you need to make the appropriate decisions. YOU need the help to deal with his needs so you might try that approach if you haven't already. If you can't get him cared for at home, off he goes to a more appropriate setting for his needs. Not a happy outlook but you have to protect yourself. Be strong in doing what you know has to be done.

Multiple System Atrophy is a rare neuro-degenerative disease. Incurable, progressive without remission, and always fatal. No attempts to rehabilite him will work. It's best to keep him as comfortable as possible. Perhaps an Hospice referral might have been more appropriate.