I would recommed www.patientslikeme.com , a website that is useful to track your condition, medications, etc. and see feedback from others who have tried it, so you can be aware of what to expect.
See the founder's talk and the idea behind the website at: http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_insp...
If you're more curious: http://blog.patientslikeme.com/The site goes beyond just ataxia, so you can track all your conditions and symptoms.
-sentient
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Permalink Reply by Patsy on March 18, 2012 at 1:32pm There we have it - up to us to decide whether or not to benefit from this site... thanks for advice .. personally I am going to think about it.
Patsy
Thank for your advice Patsy.
Permalink Reply by Patsy on March 18, 2012 at 4:57pm lol.. opinion not advice Michael and... I value your opinion ..based on all your posts :)
Patsy I am a mess!
I have ATAXIA and I remain postitive?
I research and study all the time.
I take care to exersise and diet carefully.
I document my progress or progression.
I try to be negative however I fail miserably trying to depress myself.
I have been keeping track of myself on www.patientslikeme.com for a couple of months now.
What can they do with this information?
Some people act as if they are celebraties.
Do these Ataxians have Millions of dollars they are protecting?
To raise awareness and to learn more about this disease is going to be impossible with the negative attitude most ataxians have. I understand it's not so fun having this disease however we do need to unite at some point and work together for a cure inorder to achieve the quality of life we are all striving for.
Then again it may be just wishful thinking?
Kind regards,
michael
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