Elderly MSA care

[MSA_Daughter]

Hi all

My dad, 80, was diagnosed with MSA in 2019. Given his age, this is either late onset or slower than average progression - he's also had diabetes for a while so that muddies things a bit.

At any rate, given his age, I'm less concerned with him leaving us before his time and moreso with alleviating his suffering, which seems to have grown in the last year. He has most of the symptoms you can think of, but wanted advice from others going thru this on what's worked for you on some of his worse symptoms (medicinal or not, conventional or not).

-He has no strength in his body, often saying his whole body feels like heavy lead and just is zapped of energy - even when he's not exherting physical energy. Feeling his arms and legs there's clear muscle wasting. Obviously this is a central part of the disease but has anyone had luck in alleviating the discomfort, even if it doesn't actually change abilities? He also has pretty debilitating OH and burning RLS, he's tried Ldopa and gabapentin with bad outcomes. He's not completely wheelchair bound yet but getting there.

-Mental health. He talks a lot about feeling empty and more recently about feeling apathy for life - he'll get this overwhelming feeling in waves that come and go and it's hard to tease out how much is mental or physical but in these moments he feels like he might go. I imagine this is stemming from both chemical imbalances from the disease itself as well as the justifiable frustration of the disease - and all of this can feed into to physical energy/weakness issues I brought up above. I've been considering connecting him to a neuropsychiatrist to both explore medicinal and non medicinal support. Any other ideas?

-cognitive issues. Again he's 80, so some memory loss/verbal issues aren't surprising but recently it's been pronounced. For example, he could not repeat back the spelling/name of a new town we were in when I said it in an instantaneous conversation - no time to even forget. Very worried about this as a sign of dementia. I should note he has had no brain imaging since his diagnosis.

Thank you so much

[chester2107]

hi my dad got the disease late in life around 79 , but wouldn’t take any medication even if it was offered as it wouldn’t cure him , he was really fit and healthy previously , so really sad to see him deteriorate , the MSA Trust are very helpful for advice

we just took him out and spent lots of time with him , he lost his speech which was the worst thing , and use of his hands etc , but still kept his lovely sense of humour

he passed in 2020 just before lockdown , he has had enough and took the opportunity to go when he was in hospital waiting for a peg op , it would have been awful him being stuck in there on his own

as you say , being older makes it easier to deal with , my dad luckily didn’t have any dementia signs , just lack of mobility

sorry I don’t have any proper answers for you , just be there for him ❤️

elaine xx

[567LMN]

So wonderful that your dad has yourself, you sound very understanding. In our area 80 is young with many 90-100 maintaining their activity. At times it seems annoying and unfair that hubby 75 now has some similar issues to your dad with MSA/PSP crossover. As you say waves of apathy are so unlike the previous years, windsurfing and volunteering were his favourites and he was quite a chatterer. I am not so patient as you but I do strive for answers to our new challenges and thank this group for support, hope you also get your answers.

Interesting that hubby can remember more of our 52 years together memories than me yet his short term memory is bad, hopefully he won’t remember when I am tired and nagging 🤭