Living with Ataxia

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Helen Webb SCA6 Finally Genetically Confirmed

Well after 8 months of 2 lots of MRI's, E.M.G. nerve Conduction test,Walking in straight lines (which I cant do ) and being told I am sure it's not Ataxia It is just vertigo, I finally got my Genetic blood test in January, and the results on the 16th of March I have an abnormal expansion of the cacna1a gene, and according to the Genetics councilor I am therefor likely to develop SCA6.
During my genetic consultation I was told that they could not say I was suffering Ataxia now as they were no… Continue

Added by Helen Webb on March 18, 2010 at 3:31pm — No Comments

Kati Update on Lightwriter

As you may have read on previous blogs, I had some remaining issues with Lightwriter SL40 for some time after purchase. I am happy to say they have all been resolved!

My SL40 was one of the first off the production lines and we initially had problems getting the Environmental Control to work, though it didn't help that we were pointing the remote at the wrong bit for it to learn the codes!

I also originally only had single line display and it didnt scroll, this was problem… Continue

Added by Kati on March 18, 2010 at 11:54am — No Comments

Ben Munoz How to Help LivingWithAtaxia.org

This community is all about helping. Helping yourself and helping others. Since many members have asked how they could help,
we put together a list of ways you can help.


How to Help Yourself

  1. Write about your experience in a blog posting.
  2. Ask the community a question in the for
… Continue

Added by Ben Munoz on March 15, 2010 at 11:30am — No Comments

Arif Ansari Financial Stability

The worst of all fears with ataxia is financial stability. The fear of losing your job and not having the financial stability for you and your family.

Continue

Added by Arif Ansari on March 4, 2010 at 12:10pm — 4 Comments

Ben Munoz Ataxia Spinocerebellar and Ataxia Telangiectasia Qualify Immediately for U.S. Social Security Disability Benefits

We'd like to pass along some good news for the American members of our community.

The U.S. Social Security Office has JUST added Ataxia Spinocerebellar and Ataxia
… Continue

Added by Ben Munoz on February 20, 2010 at 2:00pm — No Comments

Alan Thomas Penwest Announces Initiation of Phase IIa Clinical Trial of A0001 in Patients With Friedreich's Ataxia

Penwest Announces Initiation of Phase IIa Clinical Trial of A0001 in Patients With Friedreich's Ataxia

http://www.globenewswire.com/newsroom/news.html?d=181579

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Added by Alan Thomas on February 18, 2010 at 2:10pm — No Comments

Alan Thomas Row the Atlantic Boost

Come on, BOYS !!!, your nearly there

read their BLOG http://blog.mailasail.com/redarrow

and give them a BOOST, send them an email or message

Alan

Continue

Added by Alan Thomas on February 18, 2010 at 7:29am — No Comments

Alan Thomas Carers book The "Selfish Pigs" Guide to Caring

The "Selfish Pigs" Guide to Caring by Hugh Marriott

<a href="http://www.selfishpigsguidetocaring.co.uk/">BOOK website</a>

<a href="http://alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200120&documentID=674&pageNumber=3">alzheimers.org.uk Book review </a>

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Added by Alan Thomas on February 13, 2010 at 4:03pm — No Comments

Alan Thomas Rare Disease Day flickr photo album

Rare Disease Day

flickr photo album

<a href="http://www.flickr.com/photos/31585490@N05/">RRD photos</a>

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Added by Alan Thomas on February 12, 2010 at 12:30pm — No Comments

Cindy Fallsen treatment coverage

What sorts of treatments for Ataxia do you guys find your Health Insurance willing to cover? Some Worldwide Medical Insurance companies offer Affordable Health Insurance with all sorts of benefits. Others are resistant to covering anything that would hin… Continue

Added by Cindy Fallsen on February 11, 2010 at 4:22pm — No Comments

jason conrad jones has

anyone heard of remap wolverhampton ss got them out to lynn when she was with child they do adaptations to cots and prams, there is also trhe dppi (disabled pregnancy international they do all knids oif publications from nappy changing to finding a adapted cot for yourself and baby Continue

Added by jason conrad jones on February 7, 2010 at 7:35am — No Comments

Kati Adapting and stuff!

Glad the snow has cleared, although someone told me more is forecast, hopefully it will only be light again and won't settle for long.

I couldn't remember whether pancake Tuesday was last Tuesday or next Tues but they were selling the stuff in shop to make them so I got some stuff and made them today (just in case I missed them tuesday.. lol) If its this Tuesday coming, I'll have them again for lunch on Tuesday!

… Continue

Added by Kati on February 6, 2010 at 6:23am — 1 Comment

Alan Thomas *** Row the Atlantic***

Keep up with the progress

http://blog.mailasail.com/redarrow

map of their voyage

Continue

Added by Alan Thomas on February 5, 2010 at 8:11am — No Comments

Alan Thomas Hopkins Medicine Ataxia Symptoms

just found on hopkins medicine Cognitive and Mood Problems - In addition to motor dysfunction, patients with cerebellar degeneration may have cognitive and emotional difficulties. The cerebellum plays a role in some forms of thinking. Patients with cerebellar atrophy may have impaired recall of newly learned information or difficulty with “executive functions” such as makin… Continue

Added by Alan Thomas on February 3, 2010 at 2:18pm — No Comments

Alan Thomas Row the Atlantc

Dont forget, to keep up with the boys. read their blog RTA BLOG Continue

Added by Alan Thomas on February 1, 2010 at 6:29am — No Comments

Kati Apple iPad and Proloquo2go (text to speech)

You may remember a while back I did a post on the then dubbed 'MacTouch' by apple and its potential for Ataxians as a portable communication device. It is almost here! Announced on 27th Jan by Steve Jobs (big apple man.. lol.. not sure of his official title!) the new 'iPad' will be released in two versions.

… Continue

Added by Kati on January 30, 2010 at 8:30am — No Comments

Alan Thomas *** Karen Darke *** Inspirational Paralysed Female Adventurer

Have a peep at Karen Darke My first wheelchair, was bought from Karen. Now, the wheelchair, is on its way to Kajiado, Kenya. Continue

Added by Alan Thomas on January 29, 2010 at 4:09pm — No Comments

Scott Orn SavantMD Videos on Ataxia

I thought folks might want to see the blog post I put up thanking www.SavantMD.com for talking about Ataxia through videos. Dr. Savant is a friend and my doctor. Hopefully his videos help. What other questions would people like him to answer? http://www.kennykellogg.com/2010/01/savantmd-living-with-ataxia-partner-for.html Cheers. Scott Continue

Added by Scott Orn on January 26, 2010 at 2:00am — 4 Comments

Lorraine Lerner interesting article on chantix

http://www.babelfamily.org/en/latestataxianews/606-usf-study-with-varenicline-from-wheelchair-to-walking- Continue

Added by Lorraine Lerner on January 16, 2010 at 1:21pm — 10 Comments

Shane Bratby Top Six Tips to cope with the snow

Being disabled myself makes me wonder how all the people with mobility problems are coping with the snow, as I know it can be difficult, so i thought I would help and list top ten tips to cope with the snow. Here are Top Six Tips to cope with the snow: 1. Wrap up warm you don’t want frostbite, hypothermia, flu. 2. Ask a friend or a family member to stay with you until the bad weather is over. 3. Shopping can be done in comfort of your own home from big supermarket websites like… Continue

Added by Shane Bratby on January 9, 2010 at 3:42pm — 3 Comments

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