in the last two weeks i have experience an alarming rate of muscle loss in my arms and legs - but mainly in my legs. I do two one hour sessions of physio per week and try to do as much as poss in house and garden.
Has anyone else experience muscle loss at this alarming speed. Even my physio is shocked at the speed. I'm trying to do as much as i can to keep physical and not been completely in my wheelchair.
Hiya,
Certainly not at the rapid rate you report, but certainly over time.
Like you, I do as much as I can to keep fit but I suppose muscle deterioration is to be expected when you go from a full, active life (business travel, horse riding, ski-ing in my case until 10 years ago) to shuffling about indoors with a walking aid and using wheelchair outdoors as I am now. By the way, I was diagnosed 10 years ago with inherited Cerebellar Ataxia and am now 62.
I don't know what type of physio you're getting, but through my Consultant & G P I'm linked into the local community 'rehab' team' and thanks to a recent small legacy, I was able to join a local fitness centre (David Lloyd),
My neuro-physio from the rehab team came with me to the intro session and then a couple more afterwards to choose the equipment I should use; monitor if I could get on and off the chosen equipment on my own and set a programme for me with the staff there.
I've been going twice a week for just over 2 months now. I've noticed a distinct improvement in my leg and arm strength, which does help with balance issues when moving about indoors; assisted standing; getting in and out of chairs/bed and overall well-being. Whether it helps with the co-ordination/dexterity problems is yet to be seen.
So, husband drops me at the door and then I'm on my own for a couple of hours twice a week! Just me and my iPod. Bliss.
Hope what I've said above helps a bit and - I hope you don't mind me saying this, but - maybe you should have a chat with your G P?
Hope all goes well for you.
Hi!
For a long time I've noticed a lack of strength in my upper arms. This is very
apparent when I try to clean the windows! There's no staying power and I've
aquired bingo wings.
I never could clean windows without leaving smears anyway, no matter what
I used, even trying a steam cleaner.
Maybe it's due to the economic climate but I've never actually seen any
Window Cleaners for ages.
Definitely recognise the bingo wings they’re awful
😂 Yes, awful
Hello Wibblywobbly
I too have had your experience. I used to shuffle around using a walking frame. On day I went to the bathroom but couldn't get out, my feet wouldn't work and I had no staying power in my arms. I do masses of physio and exercise. I now use my wheelchair full time. The physio and exercise help with this.
Take care
Fifa
Have just sorted out an electrically assisted wheelchair. Will be a few months before it arrives. I have probs in arms/hands and legs/feet too. I can still manage in the house at mo. Keep going with your excercises - can you lift yourself out of your chair etc?
I experience painful aches in both legs which lasts most of the day - painkillers are not much help.
Cleaning is a chore as my arms soon begin to ache and get tired very quickly.
i have pain in arms and legs at mo too. I did get rid of the pain last year with my physio sessions, but things have become rapidly worse and the pain is back. I tried tea with a little illegal plant recently and my pain disappeared completely for 4 days. My neurologist said to drink this tea again if it helps me. Never know it could help you
"a little illegal plant"
that did make me laugh
I must admit, I`ve tried all the old fashioned Grandmother remedies from `the days of yore` but I`ve not tried that
i recommend it. My neurologist said you can grow one or two plants for own medical use and is accepted legally. It is selling it that then becomes illegal. But i do live in France - but i think the law has changed in uk too - so why not occassionally if it helps us?
Hi wibblywobbly
I am delighted cannabis has helped you. Unfortunately it is illegal in the UK to grow or be in possession of cannabis for any reason.
Best Wishes
Harriet
Ah so they haven't made an allowance for people like us - sorry i thought they had.
I am only 53.I was diagnosed with idiopathic CA about 6 years ago.The progression has been rapid and I haven't even got the strength in my arms to turn over in bed or get up from a chair.We are all different thankfully and our rate of progression varies a lot.
I first noticed it with stiles.I don't have any pain but can't do things anymore.You should see me trying to water anything in the garden;even the watering can goes flying with the water in it and I get drenched.
I haven't the strength to lift anything domestic and yet part of my brain still thinks I can do things with dire consequences.
thank you for your answers, and sorry i've taken a while to get back to you. Since this posting i have spoken to Dr at the re-hab centre and also seen neurologist. I am 47 and was diagnosed 3 years ago with unknown genetic SCA.
Apparently according to the Dr at the re-hab i need to find the balance of doing enough to keep muscles working but not so much that i'm exhausted. As my illness has progressed greatly recently i'm still trying to find that balance. I'm always exhausted 
The neurologist said that there is not actual muscle loss which is related to our illness - but obviously indirectly. I am working very hard at my neuro-physio sessions and my muscle tone is ok. So trying not to freak out and worry too much.
You are not alone with the lack of sensation in the hands it was the start of me getting any sort of diagnosis, my first was peripheral neuropathy, only changed to Ataxia after sticking electrodes in my legs, either or they are very similar.
It probably wont help, but feeling like I was losing my hands actually scared me more than losing my legs, that was five years ago and it is normal and if you keep working your hands you can keep them going, or so far for me….
You have to be more careful and happier to do an off this site chat, I don’t want to scare anyone. I have just found out over the last few years that not everyone shares my difficulty and it is and has always been quite personal to me.
If anyone feels I have overstated this then feel fee to comment
, I can tell you this the doctor will just tell you to be more careful!
Denise xx
Where from here?
