Living With Ataxia - Online Support Group


If your family has been affected by Ataxia, consider Living With Ataxia Support Network your second home.


1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Check our FAQ PAGE.

Read More from our First-Time-User Guide.

"To Know the Joy of Giving"

Need a Doctor or Specialist?


All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Gift Store

Your Community Managers


Loading… Studies

Loading… Loading feed

Useful Links

**** Able Radio ****


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.



Started by mas in General. Last reply by Lavender 1 hour ago. 7 Replies

i've had SCA2 for 18 years.  i shake uncontrolably during fall, winter & spring,  is this dystonia?Continue


Started by Alan Thomas in General yesterday. 0 Replies

The @rarediseaseday 2015 theme is Living with a #RareDisease does that mean to you?Continue

Leg Cramps

Started by Kay in General. Last reply by Ellen 8 hours ago. 14 Replies

Help!  Leg cramps are so painful.  I get cramps in my feet and I would take Vitamin B and that would make them go away but it doesn't seem to be working on my calves.  Any suggestions?Continue

Behavioral and Cognitive Neurology - The cerebellar contribution to social cognition

Started by Alan Thomas in General on Wednesday. 0 Replies

Behavioral and Cognitive NeurologyThe cerebellar contribution to social cognitionF Hoche, JA Harding, MG Vanghel, JC Sherman, JD SchmahmannSummary: Neuroimaging and brain lesion studies suggest that the cerebellum is incorporated into neural…Continue

Tags: contribution, to, social, cognition, cerebellar

Mobile App and E-Book Available for Download!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Don’t focus on your Disabilties, focus on the Possibilities

Please click on FIRST TIME USERS and WELCOME! tabs for helpful info, also the Help tab for Links . THANKS!

Ben's Friends Partners with Rare Disease UK

Rare Disease UK is the national alliance for people with rare diseases and all who support them. Members include individual patients and family members, clinicians, health professionals, researchers and industry. Rare Disease UK is campaigning for the development and implementation of a national plan to facilitate research and improve access to services and support for people affected by rare diseases in the UK.

Ben’s Friends is elated to have such a strong partner in its campaign to provide support to every rare disease patient in the UK.           

Latest Activity

Susan Harding and Prentis Clairmont are now friends
1 hour ago
Lavender replied to mas's discussion Dystonia?
"Thyroid? Interesting Marie, tell me more."
1 hour ago
Kirsten McNeill posted a photo
4 hours ago
COREY CHANG replied to runner's discussion Age at diagnosis
"My gait and speech are effected. Also my handwriting is affected. But not my vision or swallowing. Still this disease is very debilitating. Corey "
5 hours ago
Marie Turner replied to runner's discussion Age at diagnosis
"Corey My Neuro said some elements  of MSA  because of low  blood presssure but it has always been low.Although there was a smaall change it wwas not significant enough. I certainly  have no fainting on rising and never…"
5 hours ago
Marie Turner replied to mas's discussion Dystonia?
"Lots of tremor but no twistinng or pain.Father twisted a lot but was  told his  wass Parkinson's.Mine is CA.Tremor is mainly in both hands affecting eating and keyboard skills.At nightime whole body shakes making toiletting annd…"
6 hours ago
Ellen replied to Kay's discussion Leg Cramps
"Maybe PT or swimming?"
8 hours ago
Lavender replied to mas's discussion Dystonia?
"Well from the sounds of it I have a dystonic tremor because it is in one arm and hand far worse than the other and when I have Myoclonic dystonic episodes which mimic a seizure yet you are consciousness my entire body will shack violently for hours…"
8 hours ago

Top Discussions 

1 Sporadic Episodes

Sporadic Episodes

Posted by Bob on October 20, 2014

2 Leg Cramps

Leg Cramps

Posted by Kay on October 23, 2014

3 "Wesley" Part 3

"Wesley" Part 3

Posted by Suzi on October 20, 2014

4 Age at diagnosis

Age at diagnosis

Posted by runner on October 21, 2014

5 Testing my genes

Testing my genes

Posted by Kim on October 20, 2014

6 What's point of genetic testing?

What's point of genetic testing?

Posted by runner on October 15, 2014

7 Help..idiopathic cerebellar ataxia

Help..idiopathic cerebellar ataxia

Posted by joehamed on October 13, 2014

8 gluten screening test

gluten screening test

Posted by eire on October 21, 2014

9 Getting Rid of Sugar

Getting Rid of Sugar

Posted by barb1228 on October 17, 2014

10 Orthotics/Braces?


Posted by runner on October 18, 2014

Ride Ataxia

Loading… Loading feed

DONT STOP ME NOW (Alan's blog)

Loading… Loading feed

My LIfe with Ataxia (Kati's Blog)

Loading… Loading feed


Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

To Support, Click an Ad. Or Two.

Blog Posts


Posted by nicky on October 13, 2014 at 8:12am 3 Comments

Hi everyone hope you'r all feeling as well as you can.

Last Tuesday i had blood taken for my genetic test so now i'm waiting to get the call to say come see what you've got , hopefully this will answer some questions for me & not leave me… Continue

"It was either Crossfit or a Wheelchair"

Posted by vintage chick on October 11, 2014 at 5:17pm 6 Comments

Here is an interview I did, I am hoping that it is of some help to anyone who is struggling.

 International Ataxia Awareness Day is September 25 

Join Ben's Friends Mailing List

Are You In Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit for information on where to call.

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter in the Chat Room.   
5. No specific doctor or hospital name mentioned in a negative context, for legal reasons  
Specific doctor or hospital names in a positive context are welcome.
6. No sharing of members' posts to other sites without their express permission.
7. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.
Thanks for your cooperation.

Partners is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.




Ben Munoz created this Ning Network.

© 2014   Created by

Badges  |  Report an Issue  |  Terms of Service