Hi all, my mum was diagnosed with MSA Last month, misdiagnosed with atypical Parkinson’s Jan 2020. As of 3 days ago, my mum could walk unaided, small shuffling steps, but she got covid 2 days ago and a uti today and the doctor has prescribed antibiotics. Since covid and uti she has lost all power in her arms and legs and has had 2 bad falls and unable to get back up. She couldn’t move in bed at all. She needs help to walk to toilet and is very uneasy on her feet. Is this normal? We have all got such a scare. She’s changed drastically in a matter of days. Has anyone got any advice on how we can help her? Thank you so much in advance.
Jaime
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ShandyB
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Hi Jaime I am very much the same with my husband he constantly falls he freezes where the brain is not sending messages I like you am really struggling, I mentioned to physio about a Sara steady he told me he needs to keep using his legs and I need to follow him this is easier said then done as I cannot constantly be in the same room as him so he manages to get up and then either falls or calls me to get him up or stand behind him until he can move his feet, will follow your replies as I may also get some pointers. Sending hugs to you on this long hard journey.
Hi, thank you so much for your reply and I’m also sending you hugs straight back. It’s is such a difficult journey, this disease is so cruel. I hope you manage to get some advice too. My mum has had 5 falls this week alone and she just refuses help until it’s too late or tries to do something when we are not in the room. My heart breaks for her because I know she just wants to be independent. Take care and please reach out at any time if
Hope your weekend is going well, I have had a really bad one had to call family in to help move peter but he has developed another urine infection and also seems to have got a cold so praying when antibiotics kick in he will get some mobility back.
They have cleared infection but sadly he is now unable to walk I’m having a Sara steady delivered tomorrow so hopefully that will help with transferring. Hope things are ok for you.
Hi,Sad and happy that you've found us here at healthunlocked.
Unfortunately the loss of mobility be that slowly or quickly is.one of the many symptoms of MSA that we have to deal with.
You should try to utilise physio support as much as you can and keep nobility going in some way also as long as you can. Whilst at the same time limiting risk of falls and damage but using walking aids.
One thing you may find is changes in condition occur after an event like a fall or infection. You will also find everyones condition is different and rate of change is different also. We are all on the same journey just the road we are on is different to someone else. Please use the nurses at MSA trust as they have a wealth of experience and knowledge.
Good luck and please ask as many questions as you like as we are here to help.
Hi Paul, thank you so much for your response. I will be contacting the nurse specialist next week. I am so glad I found you all through this forum. I am also happy and sad that I am here too, but it’s good to know we can all be here for each other.
I think anyone with MSA who gets ill or an infection seems to respond negatively. From seeing my husband it takes a while to recover. Just persever and encourage movement. Xx
Thank you, my mum has had 5 bad falls this week alone so we are trying to get her to move/exercise safely while seated. Will call the nurse next week to get advice, thank you for your reply
So sorry to hear about this I have similar problems but have received huge help from the occupational therapist and physiotherapists who can supply lots of equipment to help with everything all on the nhs cost .Ask your doctor for a referral to a neurologist OT if you haven’t had one and the MSA nurse has been a huge help . Wishing you well Sue
infections can have a huge effect on MSA - everyone is different though. My mum has 'bounced' back after recovering...and her deterioration has been 'up and down' over the last 2 years but we too saw a rapid decline at one stage. Others are right though, the right support in place can help, in both practical terms and in dealing with it emotionally. Your GP and consultant should be able to help.
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RIP Debbie
Lost my Mum
