My husband (78) was tentatively diagnosed with MSA-P a year ago and after a positive DatScan his Movement Disorder Specialist is more certain. Yet, his progression seems slow, especially compared to the posts I am reading here. I would like to hear from others who also have slow progression and are wondering if the diagnosis is correct. His main issue is severe neurogenic orthostatic hypotension. He has mild symptoms of Parkinson's disease. The NOH preceded the Parkinson symptoms by four years. He has other autonomic dysfunction (ED, loss of smell, constipation and urinary issues (mostly frequency at night). He has had REM sleep behavior disorder for the past two decades. He has mild cognitive impairment. I guess I'm holding out hope that this might be something other than MSA. Thanks for listening.
Slow Progression: My husband (78) was... - Multiple System A...
Slow Progression
progression is very varied - from person to another and from time to time. since most of the alternatives are equally incurable it honestly makes little difference what name you give it. Just make the most of what you have , doas much as you can to alleviate the symtoms and get all the pleasure you can out of life....the sun is still shining, the birds are still singning. we know how you feel - we've been there. Please dont waste your time and energy searching for something which will be no help if you find it Go on holiday while you can and make lovely memories
As always, Freda talks so much sense. Don't put off til tomorrow what you can do today and concentrate on what you can do rather than what you can't do. Be as positive as you can be and enjoy every day. Take care, Ian
Thank you, Freda and Yanno for your kind words. We do try to enjoy our days at home. I'm anxious because I don't want to be caught unprepared. The decisions to move, stay, renovate, etc., at our age and health are monumental and have consequences both financially and emotionally. When you say "don't put off til tomorrow what you can do today" I think of what I need to do to our current living situation to allow us to stay here. My husband doesn't leave home except to go to the doctor so we are not deciding about travel plans or even whether to go out to dinner or stay home. We are deciding if we should spend our retirement money on making our current home a place where we can live until we die or not doing anything and moving to assisted living when this becomes unmanageable. Of course, I know no one but us can make that decision. As I reread my post, I realize that I was expressing frustration over not knowing what to do.
Oh, how I share this anxiety and frustration. It sounds as though you and I are in a similar living and financial situation.
I am constantly trying to solve this problem in the back of my mind. What? How? When?
Reading your reply gave me pause. I realize that, even in our current condition, we are unable to make significant changes to our home. It is just too monumental. (Such a perfect word for description.)
I have been involved in end of life care for others. We have always found a way to make it work.
Though we don’t have family to help care for us, I have people I can count on to help make decisions. I am going to reach out to them and ask for their support in this specific part of my journey.
I also have a great deal of confidence in my medical team. I know that they will help me solve problems as they arise.
Forcing me to face this fear has given me a small bit of peace.
Thank you much!
My husband was one of the unfortunates whose disease progressed very swiftly. And with Covid preventing normal interactions, it was terrible. But looking back I realise it all became about caring for his physical needs, rather than considering his mental stimulation and quality of life. If I had this time again, I would have done everything I could to feed him emotionally.
Take him out more - even when he indicated he didn't want to go - because he loved being freed from the house. Take him to the pub - so what if he was harnessed in his wheelchair to stay upright or needed to drink through a straw. Sit and do more things together, be it a crossword or quiz. Hold and turn the pages of magazines for him because he couldn't do it himself. Browse the internet for him so he could see what was being sold at classic car auctions. Subscribe to audio books so that he could listen to something of his choice when he couldn't sleep, or needed a distraction from the pain. Even just sit and watch television with him, because it would allow him to feel we could still do something together.
We both googled endlessly to try and find out more about his condition. How long, what would happen, what he would need. None of which helped one iota. What we should have done is spend all that time enjoying what was still possible and not obsessing over a disease we couldn't control.
I applaud your approach to this "mess" and agree, but I do struggle with that in as much as there are things I want/need to get on with and sitting for hours isn't on my nature . I k ow I need to do it but........How do I get MY head round it???
Don't worry, you didn't come across as uncaring and selfish at all. It is a hellish disease that devastates more than just the life of the sufferer. We tried to get our head around it, convinced that there were some magic answers that would help us understand his needs and cope better. But there weren't. My husband particularly wanted to know how long he had, but no one would answer that (all the platitudes about everyone's experience is different). And when he was much closer to the end, he didn't want to believe it.
We turned our house upside down, trying to make it more accessible for him. But all that meant was his last months were spent living on a building site - albeit it gave him something more to think about!
We had a brilliant OT (from the council) who would pop round every week or two, with another "something" she thought would help, or to see if his hoist, day chair, shower chair etc were still adequate. And probably to make sure we were coping. But one of the biggest values from her visits was she was there for him and knew how to talk to him. She chatted and generally made him still feel like a person.
And that's really my point. In trying to get a grip on his extensive care and needs, I didn't spend enough time making him feel his life was worthwhile. It was all about doing things for him, rather than with him. I didn't do that enough because it drove me crazy having to sit around for hours, living at his pace. Like everyone in this situation, I was frazzled. I was his carer, I was working from home and I had to manage this crazy building project. Not to mention the huge emotional stress and distress.
So to get your head around it, I'd line up your professional team, such as medics, OTs, SALT, charities (Macmillan were an amazing support for us). Let them carry as much of the weight of the disease as possible so that you have time to concentrate on the person.
Or is that all too simplistic?! Ultimately, we all only do what we can and what seems best at the time. And I know only too well how tough this is for you! Wishing you all the best.
Thank you for that reply you put it so well.
I think it's sinking in. I am guilty when it comes to worrying about what's to come instead of relishing what we have. I need to spend more time just sitting with my husband, napping, and talking. When you said that "I didn't do that enough because it drove me crazy having to sit around for hours," that's me (and I have Parkinson's disease). I'm finding out that I am not a very patient person and end up finishing most of what he tries to start. Often times he will ask me to finish the task but sometimes I do it without being asked - I need to stop doing that. This is difficult and I want to be a better wife and caregiver but to do that I need to slow down. Thank you for taking the time to write - your thoughts and experience are very helpful.
That last comment sounds like I'm uncaring and selfish. Sorry just having a bad morning, not feeling too good myself today. 🤒
We are in the same situation. Our house is to big with lots of stairs ,but my hubby refusing to budge .so frightened he is going to fall down the stairs, so frustrating X
I'm here because I'm in a situation where my husband has slow progressive MSA HE IS taking physical therapy for his small steps and his inability to get out of a chair. We have decided to try and find a place in a 55+ community where there are no stairs and easy shower access. It's not an easy thing to do because We bought this house two years ago and now we're gonna be moving again and we're both in our 70s. Has to be done but wrapping my head around this whole ordeal is insane. My husband was diagnosed with MSA after we moved here in 2020. We have stairs and small door openings- we were downsizing. Because hindsight 2020 was the stupidest move we made as is we were trying to get closer to our daughter. She has taken new job that is taking up all of her time and found a new love of her life and we never see her now.
do not overthink or over plan. Everyone is different--thats plain hard fact NOT a platitude. some people are dead within months and some might live for ten awful years some them wishing they were dead ,some of them quietly contented. it depends on pain level if any and mental involvement if any as well as the physical symptoms. you will be surprised and caught out an d find yourself the proud owner of wheelchait carrying car which is still under guarantee ,or a new wet room neither of which you can use because of a sudden unexpected new deterioration.. Spend your money on whatever it takes to keep the carer vertical, on people to visit and talk to the patient and anything which gives you both pleasure however small
if you have good medical support including a good hospice think very hard before leaving it. if you have familiar friends ditto.
when the worst happens try to have a continuing interest for the person left behind to help them re buiild their lives
and read what writer - in- limbo has posted...its very sensible
This sounds very like my dad. His specialist has been wary of rushing to put a label on his condition, saying that it can be difficult (or impossible) to distinguish categorically between many of the Parkinsonian syndromes until the condition is very advanced and clearly diverges from the others. So at the moment he is being treated for ‘primary autonomic dysfunction’ - which encompasses his dominant symptoms . He takes Cocareldopa, along with meds for blood pressure and digestive and urinary issues. He also sees a physio who is helping hugely with the more ‘Parkinson’s’ Type symptoms he has - mainly stiffness and some gait / balance issues.
Dad has been quite slow to accept that the doctors aren’t going to be able to ‘cure’ him, and having been active and fit his entire life, the low periods when he is too weak to do anything but sit in his chair are incredibly difficult. But I think it is just a case of taking things a day at a time, and making sure we make the most of the good times (and being very grateful for them while they last). He has become a bit reluctant to leave the safety of their house and garden, so getting him out and about to visit friends, or even just run errands is a priority at the moment. As is trying to find things for him to do when he is ‘off’ and has no choice but to spend hours sitting or lying down (which he hates).
(Like you, I harbour some secret - probably pointless - hopes, and I know my mum does too).
Yes, very similar situations. It's difficult not knowing but at least we have some hope that it may be Parkinson's disease. Has your Dad tried Levodopa? They say that if it doesn't help the Parkinson's symptoms that it is further evidence of MSA. My husband's doctors won't prescribe it for him because of his hypotension.
Yes, he has been taking cocareldopa - which is L-Dopa - for about three months. (Despite having quite dramatic hypotension).
Results have been inconclusive - I think it is helping, somewhat, but he’s not that bothered by the Parkinson’s type symptoms that the L-Dopa would help (he has no tremor, for instance). . It is the failure of the autonomic nervous system that is dramatically affecting his quality of life, and so far none of the medications seem to be helping much with that.
Interesting. My husband doesn't have tremor either but he does have myoclonus-type jerking in his legs and sometimes hands. They are so very much alike in their presentation. Does your father get winded after a small amount of exertion?
Yes - that was the first symptom that he noticed; after having been very fit all his life suddenly he was tiring far more quickly. He used to walk for hours very easily, but he started to struggle if he encountered the slightest hill. He does have good days when he is busy in the garden for a lot of the time - but anything more vigorous than that can wipe him out. He ‘goes off’ as he says, becomes very, very weak (as if his legs are ‘full of lead’) and then has to retreat to his chair or to bed. It’s one of the things that makes him avoid leaving home - his fear of ‘going off’ while he is out.
We do little bits of exercise together when I pop round in the afternoon - short seated workouts with resistance bands (there are some good videos on YouTube) or exercises designed for people with Parkinson’s. He also has an exercise bike and tries to get on that for at least ten minutes every morning. I think it is really important to find things you can do to keep your muscles working for as long as possible, rather than completely giving in to the fatigue.
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