New Member from USA: I live in USA and have just... - Ataxia UK

Ataxia UK

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New Member from USA

kenkotherm profile image
9 Replies

I live in USA and have just been diagnosed with Ataxia. Now I know what is wrong with me. In wheelchair now. At 80 years of age could have been worse to have gotten something worse.v My body feels like a rubber band. No stability from my waist up to my head.

Old photo when I was 52.

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kenkotherm profile image
kenkotherm
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9 Replies
wobblybee profile image
wobblybee

Hi, welcome 🙂 Nice boat 🙂 Ataxia can cause variable problems, at the most unexpected times. Sometimes, people can cruise through life and then find this kicks in around the age when they’d expect to be able to comfortably enjoy retirement. But....we work with what we’ve got 😉 xB

ConfusedAtaxian profile image
ConfusedAtaxian

Welcome to wobbly world, kenkotherm 🤗

Libra7 profile image
Libra7

Hello kenkotherm. I wonder at what age your symptoms began. I was 71 before I had the first symptom (started slurring). I am now 78 and was diagnosed 4 years ago. Though I wobble around unaided in the house I use a frame outdoors. Some of my friends can’t remember a time when they were ‘normal’ so I feel grateful that at least I have had a life before it all began. Some poor souls are not so fortunate. The most frightening thing is not knowing the personal progression of the disease. I feel sure you will find this site really supportive. Good luck.

ddmagee1 profile image
ddmagee1

Welcome! This is a great forum to participate in!! I, too, am from the USA, and believe you will benefit from participating in this forum.

february profile image
february

Dear Kenkothern, First of all, a HUGE welcome to this site! I also nlive in the USA (in the tate of Michigan and have had ataxia 20+ years. I'm a 65 year young woman, married with two grown children (a son and a daughter), two grown step-daughters & five wonderful grandchildren (3 boys and 2 girls). I found out in 2017, through genetic exome testing, my ataxia is due to Niemann Pick C disease (NPC), as I never imagined in my lifetime I'd have an answer for why I had ataxia! Anyway, you'll find many lovely people on this site for advice and understanding, if so desired! You are not alone in your journey! My best to you..., ;o)

1lazybug profile image
1lazybug

I am in the USA also

kenkotherm profile image
kenkotherm

Thanks go all of you for your support. Means a lot to me.

benning profile image
benning

Good Luck on your journey fighting Ataxia-IT WON'T BE EASY..LOL

kenkotherm profile image
kenkotherm in reply to benning

Thanks for your courtesy Benning. Have a goodc day

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