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Ataxia Support Network

Im wonkybut wonderful

#1

Im carrie i was born without ataxia i was a model for a hair salon and as i grew older my ataxia got progressivly worse i have ataxia with isolated vitamin e i was abandoned by my family because of my ataxia my husbands been my rock throughout.my ataxia affects my speech my balance and my body wobbles like its listening to music and its boogying to it 24/7 i get alot of stares and one women even smacked me on my legs and asked me why im in a wheelchair such fun lol i love going to church and i love the circus my fav films all the fun of the fair david essex or the greatest showman
Well thats me in a wonky nutshell nice to meet you all

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#2

:slightly_smiling_face: Hi wonkybutwonderful, welcome to the group. Members here have a wide variety of Ataxias, not all are genetic, some are like you have indicated, Acquired Ataxias due to Vit deficiency. But we all share similar challenging symptoms and have encountered much the same problems along the way. Wobbling about and speech problems are two things that can provoke unwanted attention, so I’d bet the majority of us can empathise. It’s good to hear your husband is supportive, it can make such a difference in so many different ways. I remember David Essex when he was a young bit thing, takes you back doesn’t it :wink: xB

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#3

I love david essex been to see him 7 times in all the fun of the fair im only 29 n unfortunatly i wasnt around when he was younger iv always felt a connection to that era though my talking isnt the best at times my husband understands me though so im blessed which type of ataxia do you have if i may ask
Lovely talking to you

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#4

:slightly_smiling_face: I’m linked with a Recessive Episodic Ataxia, my day to day symptoms are pretty much general to most peoples ataxia, but I have Vestibular issues which haven’t been attributed to anything specific yet. So, it’s genetic up to a point :wink:
I speak to people in a local ataxia group who have varying degrees of speech problems, and the longer I’ve got to know them the easier it’s become to understand their speech. We just all need patience :slightly_smiling_face: xB

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