Not expecting that!

[mandg]

This weekend my husband was more unsteady on his feet and his speech worse, as the day progressed he was unable to hold his own weight, needing help to get up and walk. I though a nights rest would sort it out but he was agitated and confused. After speaking to the doctors and paramedics he was admitted to hospital. My thought was that he had had another TIA but all tests prove negative, and it seems it is a progression of the MSA. Has anyone else experienced such a rapid decline in mobility? I was expecting his movement to be more gradual. He is being sent to a rehabilitation unit for physio to try and get him back to where he was, so fingers crossed.

[FredaE]

The problem is that in rehab units you only get physio at times when the physios are on duty which can mean too much sitting around doing nothing. `Keep a close eye on what they are doing for him in case you feel that he might be better at home later on so you have a better idea of what you can do for him..

[mandg in reply to FredaE]

Hi FredaE, that did cross my mind, when he is moved I will ask to see him so I can see what stage he is at, with a view to having private physio at home.

[Harebell60]

Both Parkinson's and MSA nurses have said to us in the past that deterioration is gradual. IF there is any sudden decline, to be sure to get a UTI or lung infection ruled out first. That MSA patients don't react the same way to infections as would normally be expected. Do get them to check, please.

[Diane831]

The only times that we experienced sudden change like that was a result of infection or pneumonia, as Harebell60 also mentioned. Although my husband didn’t get back to exactly where he had been previously, he did improve a lot after those episodes. Do Keep an eye on how he is doing. Does he have an OT and physio who have seen him previously who could get involved again who would know how he has been previously? Do make sure that the rehab place have information about MSA, do you have some of the MSA Trust leaflets that you could send with him, if not do look at the website msatrust.org.uk and they will send you information. They may be very used to MSA patients, but the chances are that they won’t be as it is so rare and so you need them to know something about it. (I used to joke with professionals that if they hadn’t come across it before then the leaflet would go in their professional development file! )

I hope that this blip is over soon and he gets back home.

Diane

[Fatwallet]

Totally agree with previous responses. It is always when my husband has either a water or chest infection that he deteriorates. Get him checked and get the appropriate antibiotics as soon as possible. X

[callanandmorgan]

Your post sounds like our life atm! Exactly the same . We where told the Msa was slowly progressive. But he’s only been diagnosed under a year ago. He unfortunately got covid the beginning of December. Spent almost a month in icu. And intubated twice . He was able to walk with a stick before this . Since coming out of hospital. He is unable to walk without a frame . And only a few feet . His legs give way like a rag doll . He also has had 4 uti infection s since his realise from hospital. It’s scary and depressing. And absolutely exhausting. He’s not left the house since December. When he got covid . He’s having physio once or twice a week at home . But is like a prisoner. He has now been measured for a wheel chair . So we are so shocked and saddened at the speed of this horrible disease. His speech also rapidly declined.

[mandg in reply to callanandmorgan]

He tells me over the phone that he can get up to walk, if unsteadily, but the hospital will not let him, so spending too much time sitting. I need to see how he is at the moment, but of course cannot visit. Hoping to progress more in rehab, if not I prefer him at home so I can arrange private physio. I think I need to keep him as mobile as possible for as long as possible

[FredaE in reply to mandg]

You are absolutly right.

[Hidden in reply to callanandmorgan]

Could i ask what type of physio your partner is having? Thanks Sharon x

[mandg in reply to Hidden]

Rubish!! sorry Sharron, but he has been in hospital for 2weeks now, to be fair the first week they were doing scans etc to check what had happened, but since he has been moved for "physio" 5 days were lost to Easter, and so for 4 days all he has done is walk round the ward/corridor and finally did a stair assesment, all of which he coped with fine, other than that he has been sitting in his chair, not being allowed to get up on his own. Now, I do not think that is doing anything to get someone on their feet!!. Fortunately I think ( obviously I haven`t been able to see him) he is ok and he should be home tomorrow, again it should have been Friday, but for a clerical error on their part. If it had been a regular phyiso session in outpatients it probably would have been more intensive, but not on the ward. Graham has someone when he is at home, and he has two half hour sessions a week which is more benificial, cant wait to get him back. Sorry for that rant. x

[Hidden in reply to mandg]

Gosh that must be rough for you. Thinking of you. Big hugs. Xx

[Hidden in reply to mandg]

You rant away. You have to be strong. You can't give up but just keep going. I've had my 'moments' of despair, frustration, upset, sadness. I know that my dad will call that 'character building' but it is certainly testing... I think if I could represent everyone with MSA and their right to be heard. I would...

[FredaE in reply to mandg]

Yes this is exactly what happens. They regard physio as something that will wait until tomorrow, or after Easter or after Christmas and in many cases I am sure it will. BUT with MSA it wont wait - with every day that passes with no activity a little more is lost which is not recoverable. It is not muscle tone which is lost and can be built up later. It is more like the patterning excercises for children with cerebral palsy where their brains are taught movement by repetitionand THEN try to restore unused muscles. I am a great fan of physio but there is no doubt that it is muscle based and not brain basedand this contributes to the mantra that hospital is the most dangerous place for an MSA patient. You maynot be a trained physio but third clas exercise is better than no movement. I was alsways in trouble when he was in hospital with a broken collar bone for heping him to stand and sit from his chair. The alternative was that they decanted him into the bedside chair in the morning and left him there - good for keeping him upright and keeping pneumonia at bay but terrible for his MSA. When we decided he was coming home I was put under huge pressure not to do it. "You don't know what you are letting yourself in for" particularly annoyed me me. They did not seem to understand that I had been doing just that as a sole carer for several years and I knew exactly what I was doing.I never did convince them but home he came and it was the right thing to do.

[TK-67]

Yes - mum deteriorated very suddenly at the beginning of 2020. After us insisting that it could be due to an infection, she did regain some mobility back thanks to physio, as she's looked after in a nursing home this stopped due to the pandemic and even before then we had to fight for it because MSA is a progressive disease. A year on her mobility has now gone though. Her voice issues come and go too. It's such a horrible unpredictable disease. It's worth asking the GP about antibiotics being made permanent to help manage the infections.

[Hidden in reply to TK-67]

I feel for you with regards to the 'fight'. It's such a rare disease and you realise the impact this has on care. I am constantly having to educate nurses about this as it is highly likely not to have come across this before. It's such a minefield. My heart felt empathy to all. X

[TK-67 in reply to Hidden]

the unpredictability is the worst thing, 'healthcare' seems to need a pathway of some description and MSA certainly doesn't have that. Every person is different! It's been a nightmare in respect to getting CHC funding because its not like anything else and everyday can be different.

[Hidden in reply to TK-67]

Tell me about it. Did you manage to get CHC funding in the end? This disease is so rare. My father got shooting pains down his left leg and he yelled in agony. Hospital GP arrived and said it was cramp. I can get no answer on whether MSA was ever mentioned or if indeed the GP came across it. Dreadful... Sorry for your situation.

[TK-67 in reply to Hidden]

no news yet - we've been waiting 5 months since the appeal decisions were made. It's mad!

[FredaE in reply to Hidden]

No we did not get it inspite of using the hospital and the hospice (we have never failed before!). His third refusal came on the morning of the day after he died.

I was very bitter about CHC. It was designed to be the same everywhere and it was not. Huge variations between onecounty and the next.

It depended on the division between nursing care (YES) and social care (No) Decisions made earlier on not tohave a PEG or a catheter meant that we did not qualify as incontinence pads were social and indwelling catheters were nursing and similarly struggling to keep the pleasure of eating for as long as possible was social and a PEG was nursing. We had no idea of this when we made these decisions

[Hidden in reply to FredaE]

Oh my goodness. That is awful. I am so sorry. I read your story in utter disbelief. Sending my heartfelt condolences and hope that you draw strength from the precious times together that you did have.

[Hidden]

Yes, I have experienced this too. My dad, was wobbly on his feet until he could stand no more. A rapid decline is shocking to witness. My dad lost 2 stones in a matter of less than 2 weeks. Speech even more slurred etc. Getting him comfortable and ensuring that he is pain free is the only thing I can ensure for him. Do you have Power of Attorney over his Health and Welfare? This means you can represent the wishes of your loved one. Sorry, this isn't easy. Sending my thoughts. X

[Hidden]

That's exactly what happened to my Dad. It was overnight that he went from walking (albeit a struggle) to immobility. I struggle to understand this myself but please be vigilant. This diseases rare and a deterioration. Sorry, just saying it like it is. Sending my very best wishes.

[mandg in reply to Hidden]

Fortunately I think Graham is going to be ok, he came home yesterday and is a bit slow and unsteady but I think that may be due to inactivity for 2 weeks, so hope to get him moving a bit more now, and see where we go from there. With regard to your other question about PoA, yes thats been in place for ages for us both. Thanks for your replies

[Hidden in reply to mandg]

I am relieved for you that Graham is going to be OK. Goodness knows positivity is the only thing I have at the moment! Long may Graham remain well. Best wishes.

[greenvelvet]

hi yes my husband wa not to bad then all of a sudden he is now bed ridden and has to be helped to the comode

[FredaE]

Power of attourney..Myhusbands bank stopped accepting his signature when it became ilegible so we changed int to a joint account. This made it easier when he died as all the direct debit payments continued without me having to do anything exxcept change it again to my sole account. We don't need anything extra to cope with at times like that.

[SingingFan]

Having similar issues. Since Christmas my husband's mobility and cognition has deteriorated dramatically. And since March he is now having lots of problems at night: unable to stay in bed for long, tossing and turning, wandering around the house not awake but acting out his dreams despite massive doses of medication, falling and sometimes unable to stand to get to the toilet. Suffice to say, this is causing a lot of problems and, 10 years since diagnosis, we will have to get overnight carers to help him, and so I can get some "rest". What a truly horrible disease.