Ataxia UK

Cerebellum Ataxia

My wife after 5 years after numerous Neurologist was diagnosed with ataxia,her speech is slightly slurry her Balance is not good, we've been to Columbia University,John Hopkins,Penn,Florida st,and Mayo,hopefully someone will come up with something, if they can find a new organ and a ninth planet I'm sure they will come up with something, I pray.Juan from Fla

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Hi Juan,

It sucks being diagnosed with ataxia, I was diagnosed at 50 and it has taken me 5 years to finally accept that I won't wake up one day and it will be gone! I went gluten free several years ago as recommended by a kinesiologist who had just read a book on the effects of gluten on all neurological diseases. I had several blood tests at the ataxia clinic which all came back negative - but it has made a huge difference to me. After just a few weeks on a very strict gluten free diet I noticed a difference. I am going for another MRI soon after 5 years and hope it has slowed progression - it is worth trying. Look at website 'walkingwithataxia'. Good luck,

Amanda

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yes it took 5 years and countless doctors before I was diagnosed. I also have a small acoustic neurome and normal pressure hydrocehalus. I found the speech therapist excellent for helping with speech and also with swallowing which makes going out for meals as choking on food is a constant worry- the therapist gave me tips about avoiding certain foods so see a decent speech therapist and that will be a great help all the best Sylvia

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Thank you Sylvia for your advice,hope things go well.

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Thank you Amanda

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Amanda I will have her try it,Thank you

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I wish for a cure or something that will REALLY help ataxia everyday, as I was diagnosed thirteen years ago, although I had very minor symptoms starting about eight years before diagnosis. My theory is because it keeps progressing, it's harder for me to just accept it. I'll just keep exercising for strengthand balance and eating as healthy as possible...,;o)

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Hi😊I've been pushing the vacuum cleaner around as my exercise of the day😉 xB

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I do the same.

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You go, Beryl! ;o)

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