Cerebellar Ataxia

sueflanders69
sueflanders69 Community member Posts: 3 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
My husband has a progressive brain condition Cerebellar Ataxia so is no longer able to work.

Comments

  • steve51
    steve51 Community member Posts: 7,122 Championing
    Hi @sueflanders69

    Its great to meet you today.

    I had a Stroke a few years ago now.

    This was in my “Cerebellum”

    Due my “chronic pain”  I had to also take “early retirement”

    Please please let me know if I can help you further?????? 
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,765 Championing
    Hi @sueflanders69, welcome to the community!
  • JennysDad
    JennysDad Community member Posts: 2,293 Championing
    Hello Sue @sueflanders69 and a warm (if in my case slightly delayed) welcome to the community. Glad to have you with us.
    Cerebellar ataxia is a new one on me, but I've not been a member here all that long. Clearly you must have a lot of questions and I am sure we will be able to find some answers for you.
    When you're ready, could you possibly tell us a little more about your circumstances and your husband's condition? The better we get to know you, the more easily we may find ways to be of use to you - and we do, very much, want to be.
    I did find an Ataxia support organisation, Ataxia UK, which you might like to check out if you haven't already.
    Warmest best wishes to you, and looking forward to hearing more from you,
    Richard
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,605 Championing
    Welcome to the community @sueflanders69

    You might like to check out the benefits calculator to see if you are eligible for any financial help?
  • sueflanders69
    sueflanders69 Community member Posts: 3 Listener
    Thank you so much - we will check the benefit tool in case more benefits can be applied for. Tim applied for PIP and only got the daily living allowance and nit the mobility bit which is what he struggles with. We want to apply again but are not sure how to be successful, any advice would be welcome
  • sunshine22
    sunshine22 Community member Posts: 2 Connected
    Hi my brother has Cerebellar Ataxia diagnosed about 11 yrs ago...I got him pip he is on the highest rate for daily living and mobility.

    Jas
  • sueflanders69
    sueflanders69 Community member Posts: 3 Listener
    Ah ha thank you so much - could we ask for advice on how you answered your form - are you local to Reading Jas ?
  • sunshine22
    sunshine22 Community member Posts: 2 Connected
    Hi, sorry no I am in Cheshire.  I used pip points system just google it and it shows you the points you get for daily living and mobility you have to gain enough points to pass and even more to get high rate. My brother got the highest points due to progressive mobility issues and anxiety following a familiar journey...on the mobility part.the daily living also for all the help he needs. I think knowledge of the questions and points awarded for each question is the way...my brother needs a lot of help nowdays....I would say its progressed over the years but slowly.
    Jas x
  • kirstine
    kirstine Community member Posts: 9 Listener
    I have Spino Cerebellar Ataxia 6- knew I had inherited it and no symptoms are showing. I’m 63.
    I applied for Scottish Disability Payment in Oct but because of Covid I hadnt seen GP or Consultants for a long time. I’m getting paperwork to support my claim as I reckon they’ll decline it. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello there @kristine and welcome to the community, let us know how things go with your Disability Payment application, hopefully you'll hear more soon! Are you waiting for a date for an assessment? :) 
  • kirstine
    kirstine Community member Posts: 9 Listener
    yes, if its needed @Alex_Scope. I am getting letters etc and doing a diary for a week in case I have to go to MR. I don’t know why its taking so long, its inexcusable. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Okay, thanks for explaining @kristine and so sorry for the wait. It's not an easy thing, and that is so often lost in this process, the human side so to speak!

    It sounds like you're doing all the right things to prepare for a potential MR, and if you do need any additional support in the meantime, the community is here for you, so please ask if you need anything. 

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