Remaining politically neutral during General Election 2024


Under guidance from the Electoral Commission and Charity Commission, it's important that Scope remains politically neutral during General Elections.

While we understand that this period will see many passionate discussions and do not want to discourage open discussion, we cannot allow discussions which are purely intended to influence voting.

As ever, please make sure that your comments remain respectful of other people's opinions and keep to our online community house rules.

Hi, my name is cjoy88317!

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cjoy88317
cjoy88317 Community member Posts: 16 Listener
Hello everyone 

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,665 Disability Gamechanger
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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
  • cjoy88317
    cjoy88317 Community member Posts: 16 Listener
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    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_Alumni
    Sam_Alumni Scope alumni Posts: 7,665 Disability Gamechanger
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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 ask :)
    Scope
    Senior online community officer
  • Ami2301
    Ami2301 Community member Posts: 7,935 Disability Gamechanger
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    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
  • cjoy88317
    cjoy88317 Community member Posts: 16 Listener
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    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 
  • Ami2301
    Ami2301 Community member Posts: 7,935 Disability Gamechanger
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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
  • cjoy88317
    cjoy88317 Community member Posts: 16 Listener
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    I have never heard of them shorts do tell me more 
  • cjoy88317
    cjoy88317 Community member Posts: 16 Listener
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    Any chance u could share with ur mobility history and the stages u went through 
  • Ami2301
    Ami2301 Community member Posts: 7,935 Disability Gamechanger
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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
  • cjoy88317
    cjoy88317 Community member Posts: 16 Listener
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    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 
  • Ami2301
    Ami2301 Community member Posts: 7,935 Disability Gamechanger
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    Cerebellar Ataxia or Transverse Myelitis?

    Quite a few members have the same type of Ataxia as yourself!
    Disability Gamechanger - 2019
  • cjoy88317
    cjoy88317 Community member Posts: 16 Listener
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    CA, Just chatting to people with disabilities is new for me too
  • Ami2301
    Ami2301 Community member Posts: 7,935 Disability Gamechanger
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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 not :)
    Disability Gamechanger - 2019
  • Ami2301
    Ami2301 Community member Posts: 7,935 Disability Gamechanger
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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
  • cjoy88317
    cjoy88317 Community member Posts: 16 Listener
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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 
  • cjoy88317
    cjoy88317 Community member Posts: 16 Listener
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    Awesome thanks 
  • Ami2301
    Ami2301 Community member Posts: 7,935 Disability Gamechanger
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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
  • cjoy88317
    cjoy88317 Community member Posts: 16 Listener
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