Hi there: Hello, I'm new to here and this is my... - Ataxia UK

Ataxia UK

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Hi there

Wedny1 profile image
Wedny1

Hello, I'm new to here and this is my first post. I was diagnosed with spinocellular ataxia in August 2011 and since then its been a rollercoaster with rapid onset 1st 2 years then slow progression from then on. I have tried so hard to keep on my feet and maintain a heathy lifestyle however there are so many other things that knock you down but hey ho would love to hear from anyone else who has this condition.

11 Replies

Hi Wedny, welcome🙂 I was diagnosed in 2011, and you’re right it has been something of a rollercoaster😉 There are constant ups and downs, you just have to go with flow 😉 xB

Wedny1 profile image
Wedny1 in reply to wobblybee

Totally agree with you B I started showing signs of conditions when my youngest was born, he is 8 now and I still wish I could all the things I did with my other kids but c'est la vie have to always look for positive things in my life now but there are times which I feel quite low but push through it :) x

wobblybee profile image
wobblybee in reply to Wedny1

I feel pretty much the same. Looking back, the onset of the ‘condition’ had a big impact on how I was able to cope with family life. I wish I’d had the energy and inclination to be more involved with my children. Although I feel as though I missed things, my children don’t actually remember it the same way 🙂 They’ve come through unscathed 🙂 xB

Wedny1 profile image
Wedny1 in reply to wobblybee

My older children remember the way I was climbing trees, we were always big on walking and hikes my youngest accepts the way I am as he has active lifestyle which I love to see and if I'm not fit to take him places they always step in W x

Do you know what type SCA you have? Are you still able to exercise?

Wedny1 profile image
Wedny1 in reply to sunvox

SCA unknown no-one in my family has ever been diagnosed with this condition but my gran had MS and still try exercise on not so bad days W x

wobblybee profile image
wobblybee in reply to Wedny1

🤔 Just wondering. Have you been asked to take part in the 100,000 Genome Project ? I’m also Idiopathic, I donated DNA and a partial link came up. 🙂 xB

Wedny1 profile image
Wedny1 in reply to wobblybee

No i havent just had routine MRI and CT scan and bloods! There was mention of lumber puncture but have never had that! W x

wobblybee profile image
wobblybee in reply to Wedny1

I haven’t had a lumber puncture, yet.. 😬 xB

Wedny1 profile image
Wedny1 in reply to wobblybee

I believe the sorest part of the puncture is when they numb the area or so I am told! Will see my neurologist again in October for update :( W x

When I was trying to figure out what was wrong with me, I had a lumbar puncture and it didn’t show anything. It was discovered through a genetic test that I had SCA6.

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