I’m new here and would really appreciate your sharing as my husband is showing new symptoms not present previously
Just a little background. He was diagnosed in 2020 and probably had it since 2014 but was undiagnosed as such
He was still walking and good speech 2 years ago but over the months declined very rapidly.
He has been hospitalised almost every other month with either aspiration pneumonia or sepsis due a very resistant hospital bug
Every episode deteriorates him and even with diligent rehab - he never returns to the pre-hospitalisation form
He is now bed bound but we still get him on the geriatric chair, do some cycling on the Motomed, catch some sun outdoors
But recently - he’s just sleeps the entire day and night. He’s probably awake only because we clean him etc . Brain scan show no stroke etc apart from the MSA anomalies
He is unable to talk and has very limited movement. He’s on a suprapubic catheter, PEG feed tube and recently needed a trach with a ventilator only at night. His lung capacity is diminishing
His main fear is this “locked-in” feeling. Also, would anyone know if the cognitive ability diminishes as well ?
I would really appreciate your experiences what could help or perhaps how to alleviate the inevitable. Where I live - the healthcare is good but it’s a very rare disease
Appreciation for your help in advance
Thank you
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Dankhl
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I care for my sister who is on this journey but not yet at the stage you are describing. My heartfelt sympathies are with you.
It’s a cruel and uncertain journey.
I mainly wanted to say that in my conversations with consultants and doctors MSA does not cause the patient to dement - they may have some cognitive impairment like confusion and issues with organised thought. But this is more due to fatigue and medication than anything else.
We are attached to the Sheffield NHS clinic that specialises in Gluten - related MSA/ataxia and the nurses and doctors there are very helpful and will offer advice about staging when asked directly. Most other healthcare situations don’t seem able to answer the question ‘how long do we have’ - and I guess this must be true because everyone’s journey is different.
Hi, you are clearly very concerned about some specifics of your husband's deteriorating condition and the possibility this is now end stage. You say you have good health care, I would therefore suggest you contact the appropriate professionals you know both with the general concern about end-of-life conditions/indications/treatments and palliative care and also, perhaps with each specific specialist, about each of the seperate medical issues you identified e.g . sleeping all day,lung capacity,cognitive function and so on. Maybe make a list of the names of your specialists/teams and allocate specific questions to them. Then get on the phone...
Regarding end-of-life issues and palliative care you should have either had a referral to a local hospice and/or a health service palliative care unit already so if not please badger someone to get it asap.
Support, answers to some of your questions and directions on where you can get more help can also all be had from the MSA.Trust. Why not give them a ring on Tuesday morning when the office reopens.
As we all know MSA is progressive, debilitating, incurable and with no disease modifying treatments. This b'stard disease also likes to throw a new symptom at us from time to time, the clue is in the name, M=? And it's terminal (I'm not a fan of the expression "life-limiting-condition").
So you are exactly right to use the word "inevitable" regarding your husband's journey to its predictable destination. However I would point out that you, and I, and every other human on this rock are on a journey to precisely THE SAME destination. It's just that your husband, and myself, have unfortunatey got a ticket on the bullet train as opposed to a slow scenic wandering through various countries.
How long is left of your husband's journey ? Well, that is rather an Almighty question. Beyond my sphere of knowledge I'm afraid ! What I do know is that things can, and should, be done to make whatever is left of the journey as good as possible. What does "good" mean for your husband ? Can you ask him? You say he can no longer speak but refer to his fear of being locked in, presumably you have some communication then ?
I am very much in favour of the person with MSA being in charge of their own life, daily living, quality of life, etc, even if they have virtually no ability to do anything by themselves. As long as there is a means of communication and a useful degree of cognitive ability this is possible.
Sorry to hear your story, but it is a familiar story with changes in condition and symptoms occuring after an illness or trauma. We all know that a change happens its very rare for a reversal so we have to adapt.
Sleeping 24 hours is a lot and with the run if infections that you've been having its something to be expected and sounds as if he is still not fully recovered.
Lack of cognitive response is usually attributed to fatigue as opposed to MSA.
Please get as much help as you can as all you can do is monitor and manage at this stage and hope that he becomes more allert. Infections are the biggest danger to life for a MSA sufferer so keeping on top is a priority.
My appreciation for being there for us. It means much.
hello, its hard to comment accurately, as everyone is different, but the scenario you describe sounds similar in various ways to how my Dad was in the last year or 2 of his life. Its possible one of the episodes of pneumonia will eventually prove too much for your husband's strength. Dad's gp gave him a year to live 3 times in a row! He had cognitive impairment as described clearly above, but didnt get more locked in than what you are describing. He could do a lot with just a look Sometimes he would just doze if he felt like it, or if he knew the postural specialist was coming round
Services should prepare you properly for the possibility of a decision to withdraw the Peg feed if he deteriorates a lot.
Sorry if this is hard to read. Its a brutal but precious time. It sounds like you're doing really well. Just take it one day and one new symptom at a time. Keep updating his doctors. Try and soothe your own nerves often, even if you dont feel like it.
my dad suddenly deteriorated like this , everything just got worse and slept a lot,
fortunately he didn’t get any symptoms until he was 79 so had a good healthy life until then
unfortunately we lost him just before lockdown , he was about 84 , he had lost his speech , mobility and his eyesight was failing , but still kept his fabulous sense of humour , he had had enough and just wanted to go
deaar dancing I'm having trouble w with lots but love when my husband 💕 💓 💖 of 55 years talks if funny travelling we've lived all over the world always makes us laugh. Sorry for carer's think worse for you. GOD BLESS
I feel for you, your husband's history reads almost identical to mine. He started symptoms too in 2014, told he needed spinal fusion surgery, symptoms progressed and was finally diagnosed with cerebellar ataxia with Parkinsonism in August 2016 then MSA in January 2021.
He has had aspiration pneumonia three times, the last just weeks ago which he is not recovering from, he is now bedridden and eating very little, he keeps saying strange stuff that doesn't make sense and seeing things that aren't there. He refused to have a PEG feed tube which is his right to decide so his doctor thinks the strange behaviour is due to him getting dehydrated, if I try to get him to drink water, even with a straw, he just chokes, everything has to be thickened. He sleeps all day unless I disturb him to change his diaper and turn him to prevent pressure sores. I think he just want to go as he has had little enjoyment in life this past year.
His doctor says it is only a matter of weeks before he passes.
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Sometimes he would just doze if he felt like it, or if he knew the postural specialist was coming round 
what Next
Advanced MSA / Towards the end
Breathing/sleep issues 
A chance to help the MSA Trust
Back in hospital.
