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Hi, my name is cjoy88317!

cjoy88317cjoy88317 Member Posts: 16 Listener
Hello everyone 

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @cjoy88317
    Welcome to the community :) Do you want to tell us a bit about yourself?
    Scope
    Senior online community officer
  • cjoy88317cjoy88317 Member Posts: 16 Listener
    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 
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    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 ask :)
    Scope
    Senior online community officer
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    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 physiotherapy :)
    Disability Gamechanger - 2019
  • cjoy88317cjoy88317 Member Posts: 16 Listener
    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 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    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
  • cjoy88317cjoy88317 Member Posts: 16 Listener
    I have never heard of them shorts do tell me more 
  • cjoy88317cjoy88317 Member Posts: 16 Listener
    Any chance u could share with ur mobility history and the stages u went through 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    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
  • cjoy88317cjoy88317 Member Posts: 16 Listener
    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 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    Cerebellar Ataxia or Transverse Myelitis?

    Quite a few members have the same type of Ataxia as yourself!
    Disability Gamechanger - 2019
  • cjoy88317cjoy88317 Member Posts: 16 Listener
    CA, Just chatting to people with disabilities is new for me too
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    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 not :)
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    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
  • cjoy88317cjoy88317 Member Posts: 16 Listener
    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 
  • cjoy88317cjoy88317 Member Posts: 16 Listener
    Awesome thanks 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    Hit the nail on the head there! Let us know if you have any luck with the Lycra! :)
    Disability Gamechanger - 2019
  • cjoy88317cjoy88317 Member Posts: 16 Listener
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