My husband is in his 7th year of condition. Last week he was admitted into hospital suffering with Pneumonia, he was discharged 4 days later after being given intravenous antibiotics. We have had to have a care package put in place, I realised I could no longer cope with trying to transfer my husband to toilet etc on my own. This is working well for us and I wished I had requested help sooner but you battle on trying to retain some semblance of a normal life.
Unfortunately my husband has now seemed to have lost all his core strength, he is finding using Sara Steady very hard, co-ordination and dexterity have declined, speech has become much quieter. All this has happened since his hospital admission with Pneumonia. I wondered has anyone else had similar problems and if so did they improve a little after complete recovery?
Written by
Jud11
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Unfortunately you are seeing the worse side of MSA that we all encounter. In mine and many mores experience when a sufferer has a bad illness or accident then there condition gets worse. Infections are very common to cause this and a few of us now carry and emergency pack to administer them quickly as sufferers do not present illness as easily as we would.
Unfortunately one the condition progresses you will not return to previous levels and you have to adapt. It may get a little better.
Thank you for your response and wise advice. It was very frightening how quickly my husband got very ill, as you say MSA sufferers do not present normally. I am going to have a word with our GP and get an emergency supply of antibiotics. Kind regards.
Thankfully my husband has picked up just a little over the last two days but his spirits seem low, try so hard to keep him interested in the things he used to love. He is often seems not present when we have visitors🙈 guess speech is such hard work and easier to just sit back and not engage.
My husband and I are in a very similar position 7 years into his MSA. Fortunately he has not had pneumonia but has had several UTI’s. His determination is very gradual but we’ve now gone down the route of Self Directed Support which means the support hours are calculated and the NHS fund it. So far we have employed our daughter for 18hrs per week but now like you I’m finding it very difficult to transfer my husband as he is barely weight baring at all, so have asked for more support hours. I’m a bit stuck as to what to do next. We had a brief trial of a Sara Steady and it just wasn’t feasible due to space but now my husband wouldn’t be able to pull himself up. So I don’t necessarily think the pneumonia is the reason for your husband’s determination, I think it’s a common symptom of MSA. It’s very difficult to live with but it’s absolutely necessary that we accept help/support. Thinking of you.
Thank you for your response. I am going to investigate the NHS funding now that more support is needed. I do not think my husband will be able to use the Sara Steady for much longer should the deterioration continue on its current path. It is such an awful condition for both sufferer and carer, it often feels like it is getting the better of me, it is so difficult to watch the decline. Kind regards to you and your husband.
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