Hi there

[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.

[wobblybee]

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 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 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 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

[sunvox]

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

[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 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 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 in reply to Wedny1]

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

[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

[Wayne2010northbay in reply to Wedny1]

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.