Cerebellum Ataxia: My wife after 5 years after... - Ataxia UK

Ataxia UK

4,090 members4,663 posts

Cerebellum Ataxia

jmkq88 profile image
9 Replies

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

Written by
jmkq88 profile image
jmkq88
To view profiles and participate in discussions please or .
9 Replies
Zigalig profile image
Zigalig

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

sylviagreenhalgh profile image
sylviagreenhalgh in reply toZigalig

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

jmkq88 profile image
jmkq88 in reply tosylviagreenhalgh

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

jmkq88 profile image
jmkq88 in reply toZigalig

Thank you Amanda

jmkq88 profile image
jmkq88 in reply toZigalig

Amanda I will have her try it,Thank you

february profile image
february

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)

wobblybee profile image
wobblybee in reply tofebruary

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

Plopony profile image
Plopony in reply towobblybee

I do the same.

february profile image
february

You go, Beryl! ;o)

Not what you're looking for?

You may also like...

Cerebellum ataxia

Hi My brother had been diagnosed with cerebellum ataxia. They think it was caused by a virus. It...
Panthava profile image

IAAD19 fundraising. Cerebellum ataxia with Atrophy

Thought you might like to see/read this local write up In our local paper, my friend did 2 mornings...
Legs-alive profile image

Cerebellum ataxia support groups?

Hi I am the partner of a cerebellum ataxia sufferer, does anyone know of any local support groups?...
jules51 profile image

Going to Miami with cerebellum ataxia

Got stopped at Thorpe Park ,few years back , they said they thought I was drunk the way I was...
rickstar profile image

Cerebellum Ataxia after a Viral Infection

Hello everyone 😃 I have been diagnosed with cerebellum ataxia after having a viral infection. I...
-marie- profile image

Moderation team

See all
HarryB profile image
HarryBAdministrator
VE93 profile image
VE93Administrator
WendyBom profile image
WendyBomModerator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.