I wonder if anyone can help?Sit to stand .

[Monkeyfeet1]

I can only sit to stand with hubby’s help. I don’t have any balance and use an electric wheelchair downstairs and a walker upstairs. I still have strong legs but no balance . Can anyone advise what I should do?

Thank you 🙏🏼

[Paul_and_Sue_Wood]

Hi

The loss of mobility is unfortunately a common occurrence for MSA sufferers and its a hurdle we will all have to overcome.

There are many hoist aids to help you raise up as eventually hubby may get hurt helping you as your mobility decreases. These hoists are available through your local health authority through the occupational therapist attached to your GP/Hospital.

Have a chat with the brilliant people at MSA Trust as they have a lot more knowledge in this area and can help you.

Good luck.

Paul

[Monkeyfeet1 in reply to Paul_and_Sue_Wood]

Thank you x

[Gallowglass]

have you tried Physical Therapy. It helped me a lot. Took several months of appointments

[Monkeyfeet1 in reply to Gallowglass]

I’m doing physiotherapy, I think that’s similar. Thank you 🙏🏼

[Whitefeather1]

when my friend lost the ability to stand the OT got her a reclining chair the raised her to her feet. To get her out of bed we used a Sara Steady. It's quite a bulky piece of equipment but was invaluable. Speak with your OT. Caroline

[Gill-C]

I might have misread your question (in a way which relates to me 😊), but I saw it more as frustration that your legs are quite strong but your mobility is hampered by dreadful balance.

If so, that’s exactly my problem. I haven’t yet found anything that could be described as anywhere near a solution, but Neurophysio (as distinct from ordinary physio) was quite helpful.

G x

[Monkeyfeet1 in reply to Gill-C]

Thank you - it’s exactly that! My neurophysio is great but a bit out of her depth i think.

[Gill-C in reply to Monkeyfeet1]

frustrating isn’t it?! I’m lucky enough to have Neurophysio at the National (Queen Square London). Did quite a bit on balance. V good tho of course only so far one can go Gx

[Monkeyfeet1 in reply to Gill-C]

I’m under nhnn but all on zoom! I keep plodding on thinking they must be helpful!

[Gill-C in reply to Monkeyfeet1]

Ah much better in person I would think

[Derkie54]

Hello,

Sorry to hear that you're struggling with your balance.

My wife went through that phase and following the use of a walker the only piece of equipment that we found invaluable was the Sara Stedy, they are quite big so it's best to check that you have the room for one. It was using that or me having to try and lift L from bed to chair etc etc. As others have said you can get them from your local Occ Health dep't, they will probably want to do an assessment first.

This MSA keeps throwing up new challenges, we found that accepting it and trying to adapt as best you can to your new normal was the only option.

Take care.

Derek

[Monkeyfeet1]

thank you, Derkie 54

[janecbain]

Its frustrating isn't it? That we have the ability to do things and yet we can't!

For example I can sing but I can't talk . I can jump when someone holds my hands and jumps in front of me and yet I can't shift off the floor without them! I fall over when I stand still - losing my balance and just plummeting to the floor and yet I can balance on a a wobble board and even managed to paddleboard last year! I can draw but I can't write. I can run but I find marching on the spot a really difficult activity to do.

I am still active as you can tell and enjoy doing the things I can do and try not to mourn the loss of the things I can't! Although is can be b*****y frustrating at times

Regarding the balance all I can say is keep practising with your husband to keep the thighs active and resign yourself to it? No point in worrying over what can't be changed is the way I look at it!!

[Monkeyfeet1]

that’s really good advice. I used to run and paddle board now I just sit!