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What is Ataxia?

The word "ataxia", comes from the Greek word, " a taxis" meaning "without order or incoordination". The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. Ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system.


Seems to be managing

Started by Nakina Goff in General. Last reply by Cicina yesterday. 11 Replies

I have not posted any update over a year.  I actually have not experiance any progressive syptoms. I wonder why me. Although I still have my balance off It actually seems not as bad as it was lastyear. that weird. my speech is not slurred as much…Continue

A wheelchair?

Started by Michelle in General. Last reply by Lorraine Lerner yesterday. 20 Replies

Hello everyone,I am very newfrom last week. I speak with Dragon software, so there is a grammatical error, please ignore.I just want to throw at question out theresend someone in South Africa just posted this morning regarding a wheelchair.Does…Continue

Wheelchair Mag or Spoke wheels

Started by Linda in General. Last reply by Jenny on Thursday. 1 Reply

Hi all I am going to order my new wheelchair tomorrow. A Rollability mk2. I am thinking of asking for Mag wheels, slightly heavier but easy on the fingers when rolling on my own. Any one have wheelchair with mag wheels are they a good choice.Thanks…Continue

Benefits to not getting tested early

Started by Olive in General. Last reply by Linda on Wednesday. 24 Replies

Hey everyone,I joined the website today and went through several pages of posts and a lot of information, but had one question that wasn't answered. My mom has SCA 3, and so do two of her siblings (out of 3). Her mother also had it. I am worried…Continue

Later stages Cerebellarr Araxia

Started by Lori Binder in General. Last reply by Melanie Gratton on Friday. 13 Replies

Hi there! My mom was diagnosed at 49 after many years of misdiagnosis. She is now 72, in hospital, had a feeding tube put in and her speech is hardly understandable. Her cognition is now at a point that it is hard to tell how much she understands.…Continue

International Research Conference

Started by Beryl Park in General. Last reply by Beryl Park May 20. 7 Replies

This may have been the largest Ataxia Research Conference to date.Please follow this link - www.ataxia.org.uk/ and click on 'research'On the same link - new video by AtaxiaUKContinue


Started by tc232323 in General. Last reply by tc232323 May 19. 2 Replies

I can't remember for sure but think someone mentioned that there was a female member on here with both dystonia and cerebellar atrophy. I'd really like to speak with her as my partner has been given a diagnosis for both of these. Warm Regards xContinue


Started by tc232323 in General. Last reply by Beryl Park 3 hours ago. 6 Replies

Hi Everyone,Warren ( my partner) had his blood taken today in Ipswich to be sent off for testing at the Genetics Lab in Cambridge. The neurologist said it would take 2 months. We wondered why it takes so long. Any advice or experience of of length…Continue

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Latest Activity

Beryl Park left a comment for Uhll cool
"Hi Uhll cool, welcome to the group :-) You'll find lots of support here, connecting with others who cope with similar challenges is very helpful. Your relatives may have already used this site, if not, have a look around, discussions can be…"
2 hours ago

Beryl Park replied to tc232323's discussion GENE TESTING
"Because I'm Idiopathic I donated DNA, that was in 2011. At the time I didn't match any of the types. Late last year a geneticist told me they were close to finding a match but I've heard nothing since then. My MRI confirmed…"
3 hours ago

Madere (dancermom) left a comment for Uhll cool
"Welcome, Uhll cool, to this supportive community. Feel free to open a discussion to introduce yourself or ask questions. Best wishes!"
5 hours ago
Profile IconUhll cool and Dale Hart joined Living With Ataxia - Online Support Group
5 hours ago
tc232323 replied to tc232323's discussion GENE TESTING
"Thankyou Alle this is helpful =)"
15 hours ago
essentialoilgirl commented on Marjorie's blog post Professional Development...Feeling Foolish
"Do it! There is always a way! I have spent my life working to have my perfect job, than bam, taken from me (or so I believed). My employer has asked me to freelance jobs at my own pace from home and via conference calls, and I will be assisting in a…"
17 hours ago
Alle replied to tc232323's discussion GENE TESTING
"Hi, it took about 2 1/2 months to obtain my results because they run different test to show results if one is negative (or that is what I was told).  They source to see if you have a common ataxia first, then move on from there. Hope that helps."
18 hours ago
Alle posted a status
"The past few days have not gone so well, upper back pain especially between the shoulder blades, pain in the upper thighs and calf muscles.."
19 hours ago

Top Discussions 

1 A wheelchair?

A wheelchair?

Posted by Michelle on May 20, 2015

2 Seems to be managing

Seems to be managing

Posted by Nakina Goff on May 21, 2015

3 Benefits to not getting tested early

Benefits to not getting tested early

Posted by Olive on May 19, 2015

4 Later stages Cerebellarr Araxia

Later stages Cerebellarr Araxia

Posted by Lori Binder on May 18, 2015

5 is pregnancy something i should consider?

is pregnancy something i should consider?

Posted by clumsyiam on May 16, 2015

6 SCA5


Posted by Steven on November 13, 2014


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Blog Posts

Any SCA 5 ataxians out there?

Posted by Alle on May 22, 2015 at 5:55pm 6 Comments

Hi, I am new to the site and my father and I have SCA 5, there is little to no research out there and what is there does not fit us at all.  Ours is NOT slow and he is wheelchair bound.  DNA genetic testing confirmed our diagnosis, so we know for…



May 2015

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