Hi, my name is cjoy88317!
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cjoy88317
Community member Posts: 16 Listener
Hello everyone
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Hi @cjoy88317
Welcome to the community Do you want to tell us a bit about yourself?Scope
Senior online community officer -
Happy too I’m 40 years old and a father of 4 I have been suffering with cerebellur ataxia for about 2 years which is a rare neurological disorder affecting balance coordination and speech to name a few I feel an online community will be a good source of advice and support
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It's great to meet you! We have a friendly and supportive community here so jump in and get involved, if you have any questions, please don't hesitate to askScope
Senior online community officer -
Hi @cjoy88317 welcome to the community!
I have Ataxia however neurologists can't specify which type, I did have major co-ordination issues however these have improved over time with intensive physiotherapyDisability Gamechanger - 2019 -
I am in the 100000 genenode project for a long research project to find which type I have, I am now using a walker eventually in a wheelchair but exercise has been a great help
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I recall another member being in the same project, I will have a look to see if I can find them! I can now walk about 1m with a walking frame but mInly use a powered wheelchair. Do you use Lycra sleeves/shorts to help with the co-ordination? I do and they have helped me improve so much!Disability Gamechanger - 2019
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I have never heard of them shorts do tell me more
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Any chance u could share with ur mobility history and the stages u went through
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I will have a look for the packet that they came in then tell you a bit more about them - I'm still looking for Lycra shorts a bit similar to what cyclists wear.
Sure, not a problem.
I think it was late March last year that I started to have balance issues. Over the coming months I was beginning to walk like a 'drunk' and had terrible foot placement. September time I became wheelchair bound. Then having quite a few falls.
I did go to the Neurology Hospital in London for various tests such as spinal MRI, brain MRI, lumbar puncture, blood tests, nerve tests. My diagnosis was I had severe nerve damage and Ataxia. However, I have had to battle against Transverse Myelitis, meaning my spinal cord became inflamed. Affecting the cervical and thoracic region. I had to learn to reach, sit up, stand up and walk again. Which I have done but overall it's took 6/7 months to do this.Disability Gamechanger - 2019 -
Blimey u have had a rough time over a short period, really appreciate u telling me ur story I don’t know anyone with this condition
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Cerebellar Ataxia or Transverse Myelitis?
Quite a few members have the same type of Ataxia as yourself!Disability Gamechanger - 2019 -
CA, Just chatting to people with disabilities is new for me too
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I know what you mean, felt so overwhelmed when I first joined, but 8 months later I have gotten to know some pretty amazing people. To begin with you think you're alone, but on here you're notDisability Gamechanger - 2019
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By the way I just looked at the packet that my Lycra sleeves came in, I think it is DMO but NHS referred me to them so it might be worth talking to your GP about?Disability Gamechanger - 2019
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That’s very comforting. As much as people say they understand people don’t who aren’t in the same situation or have the same condition really don’t know
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Awesome thanks
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Hit the nail on the head there! Let us know if you have any luck with the Lycra!Disability Gamechanger - 2019
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Will do
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