Rare brain condition

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jayramphal
jayramphal Online Community Member Posts: 10 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
I have a rare brain condition called leukodystrophy shortened to ALD
This has deteriated since i was diagnosed in 2010. My mobility has been affected drasticlly and need to use a wheelchair. More recently my arms have lost strength to manuver the chair. I was told i can get an electric wheelchair but looking at prices they are expensive and i do not have the money.

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  • janer1967
    janer1967 Online Community Member Posts: 21,922 Championing
    Hi again, Have you contacted wheelchair services as they will assess you and if they think you need a power chair they will help sometimes even supply.

    The other option is if you claim PIP and get enhanced mobility you could get one through the  mobility scheme or use the money to purchase one

    You can sometimes find some real bargains on Facebook or gumtree or at dealers who sell second hand 
  • jayramphal
    jayramphal Online Community Member Posts: 10 Listener
    Yes i get pip but low rate not able to get services from motability
    I have an NHS wheelchair which i manual and they can not provide a powerchair because my hall is to narrow and they do not provide powerchairs for outside use only 
  • janer1967
    janer1967 Online Community Member Posts: 21,922 Championing
    I dont really know what you can do then 

    Do you think you may be worth reporting change in your condition to try and get enhanced pip 

    It would be a risk though 
  • jayramphal
    jayramphal Online Community Member Posts: 10 Listener
    I can try 
  • jayramphal
    jayramphal Online Community Member Posts: 10 Listener
    Ok
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @jayramphal, unfortunately that is common for NHS wheelchair services. Here is an article about ways to fund a wheelchair. It includes finding the right chair for you and grants that you might be able to apply for. I hope this helps. :)

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