Libra74 days ago
Has anyone had experience of using the dm orthosis vest or shorts (dmorthotics.com) to help with stability and balance? I have enquired ab...
Exercise without out leaving your chair!
All Ataxia sufferers know that excercise is the single most beneficial thing which we can do to help ourselves. Unfortunately some of us ca...
3 Replies1 Like
My SCA1 progression has stopped. Update 3 of my alternative therapy for SCA1.
sunvox8 days ago
My name is Joe Peck. I am 52 years old and have a genetic diagnosis of SCA1 with a CAG count of 42. I had early symptoms, but now I am sympt...
2 Replies5 Likes
Chair Yoga for the lower body
Staggy18 days ago
Hi Fellow Ataxians
I found this one too. Darcie's instruction is really good, some of you might like her routine. My left leg is sometimes a...
6 Replies6 Likes
Malvern Support Group
Woodturnerman8 days ago
I would like to thank everyone in the group who made me feel welcome.
It was a great couple of hours chatting to very friendly people. I am l...
4 Replies2 Likes
My Parents have suggested I get a Medical ID Tag. Does anyone else have one of these?
EmWakie11 days ago
peterallison11 days ago
Well after the last social worker , kind of deserted me, I have got another, and she said as I had a mess with my PIP application, last Jul...
1 Reply6 Likes
Ataxia and infections
Guyb12 days ago
I have ataxia and keep getting chest infections and urinary infections just come roundfrom latest bout was admitted to hospital and spent tw...
8 Replies1 Like
Tiredness- Help needed.
illerpath12 days ago
Ever since I turned 17 back in Feb. I have been feeling exhausted from doing nothing. I get out of breath when walking to the bathroom, in t...
Mannitol real world results.
sunvox13 days ago
So a new video came out from CliniCrowd and what a shocker . . . mannitol is helping people who didn't give up after a month . . .
6 Replies1 Like
Gentle Chair Yoga
Staggy115 days ago
I found a gentle chair yoga on Youtube which I enjoy (sometimes!) some of you might like it too. I think it helps with mobility and yo...
7 Replies4 Likes
Sammy41815 days ago
My husband has had Freidreichs Ataxia for over 30years, we have been able to live a good life, nice holidays and general he has had good hea...
bevvick196416 days ago
In the last few weeks I’ve been losing the feeling in my fingers
I’m in a lot of pain in my joints too
I have SCA6
I’m so fed up!!
15 Replies1 Like
Shahidzak16 days ago
I have ataxia I sleep a lot is normal
5 Replies1 Like
Phase 3 trial of acetyl-DL-leucine for CA and SCA.
sunvox19 days ago
Running out of time so have to just post links and come back to this later, but this looks very interesting:
Acetyl-DL-leucine improves gait...
18 Replies4 Likes
Pekingese219 days ago
Hi all been reading some of your posts. I've had spinal cerabella ataxia for twelve years was diagnosed when I was 50. Stopped playing foo...
5 Replies3 Likes
I am new here..
Skumar077819 days ago
I am 31 years old man. I Suffered lithium toxicity which led to Polyradiculoneuropathy.. Named... Acute Inflammatory Demyelinating Polyradic...
1 Reply2 Likes
Thiamine and Mannitol???
Litty21 days agoPOPULAR
Obviously everyone is VERY different. I have SCA1 and love to read Joe's tips but they do not seem to work for me so far and I am getting w...
21 Replies1 Like
willywade22 days ago
My husband now cannot walk at all.. his legs are very stiff. Sadly his arms are also going the same way. He has no balance what so ever. He ...
7 Replies1 Like
My experience with extreme tirdness
Jobbo1622 days ago
I have ataxia SCA1 I lost 18 stones in weight .I develop AF heart condition which was extremely painful until I had the operation. I finding...
CA by "bad luck"!
boki25 days ago
I havent posted a while.. So, I did some tests and resoltst came. ALL of my tests were good; just like "normal" person.. Dr. said that...
Exercise rescues SCA1 mice.
sunvox25 days ago
So I came across this study years ago and forgot about it. Long before I got to where I am today in terms of a complex regimen I was alread...
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12taza month ago
Does any body know if ataxia effects breathing and pains in chest and back
2 Replies1 Like
EmWakiea month ago
Hi, I have recently been diagnosed with Ataxia 3. I’m a 33 year old nurse and would love to hear from people living with the condition x
tedjohnsona month ago
Just got my new electric wheel chair. It's very good but I think I should have L plates!! I will have to get busy with the Polifilla to ...
6 Replies4 Likes
AnneMenziesa month ago
Hi everyone I haven't posted for a while. But I was kind of wondering if you can drink coffee with ataxia and high sugar levels.
stjamesangela month ago
How much Trelahose should I take each day? can anyone advise please.
Thank you x
Trehalose Sugar Supplement
mpagganwalaa month ago
So I have started taking both Trehalose 100 g daily and Tru Niagen 500 mg x 2 daily. Reason for this post is to ask if there is a cheaper an...
SCA type 2
vinupra month ago
Hello every one,
My Name is vinu radhakrishnan from india, i am 33 years old boy. I have SCA2 type,Today i consult my doctor for regular chec...
8 Replies2 Likes
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wobblybeea month ago
For clear, free and impartial advice on - Care and Support, Money and Benefits, Health and Mobility
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