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Thread: Friederchs ataxia

  1. #1

    Mrs green

    Hi anyone I'm new to this so please excuse any mistakes. I suffer with a rare genetic condition called friederchs ataxia I was diagnosed in 2007 aged 34 after years of going to my gp with problems with balance, coordination and mobility issues , when diagnosed I was advised to claim DLA in which I was awarded low care and high mobility indefinitely as the condition is progressive and no cure and no treatment about 1 in 50000 chance of this condition . Over the last 8 years has got worse I have a wheeled trolley,7handrails,shower chair my husband helps me into shower as over bath and handrail isn't close to bath to reach he does the cooking as my balance and coordination would put me at risk in the kitchen. I use a mobility scooter outside even in the garden
    I was reassessed for PIP my award letter came I have lost my daily living kept my mobility but states looking at claim in 2017 as condition may change. Asked to look at again I also got atos report I doesn't even sound like the report is about me no physical examination on walking and balance all done while seated my consultant can't beleive what was written aparetelly as I was able to while seated itch my lower leg I must be able to run a marathon
    I just wanted to know if anyone out there has FA and had the same issues.

  2. #2

    Friederchs ataxia

    Hi new to this does anybody out there suffer with friederchs ataxia been awarded PIP as I have been told not entitled to any daily living even though my balance,coordination is very poor,awarded enhanced mobility due to not being able to walk unaided. This was a reassessment after being on indefinite DLA since 2007 my condition has progressed in 8 years that is why I was reassessed I am now being told my condition may change so they will look at it again in 2017 do they realise it is not called a progressive condition for nothing. Just wondered if anyone else has had trouble with PIP as this condition only affects 1 in 50000

  3. #3
    Senior Member
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    I don't know much about the condition but with the symptoms you describe I'd focus on anything that requires balance and coordination. For example preparing food this could apply to standing over a hot cooker or cutting vegetables.

    I'd work through the list of descriptors and identify any where lack of balance / coordination could create an issue.

  4. #4
    One says need help preparing a meal my husband prepares and cooks dinner as I am unable to lift anything in/out of the oven told atos this but the report came back I was able to cook a simple meal also told assessor that hubby helps me into shower over the bath I have a shower chair and 2 handrails but one is a good distance from bath. My husband also helps with fastening buttons and laces and cutting meat up when we have it. I have 7 handrails at home a wheeled trolley for indoors a mobility scooter for outdoors. I asked the decision maker how can the assessor know what my daily living requirements are in 36mins and never heard of friederchs ataxia also when asked to perform squat and rise I held onto the desk and my legs started to buckle but according to the report I have normal power in legs my report is a joke there is a lot of mistakes on my report just waiting to hear back
    Thanks for your reply

  5. #5
    Senior Member nukecad's Avatar
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    Did you go through the process of asking for a Mandatory Reconsideration, and then appeal to the tribunal if necessary?

    You have this right if you have not left it too late.

    They will warn you that they reconsider everything so there is a risk that you could loose what has already been awarded.

    A lot of people here have been through this process and had their award increased.

    As Carl says you need to concentrate on how your condition affects your ability to carry out the tasks given in the descriptors they work to.

    You can find a lot of useful advice about this in the 'sticky' PIP thread.
    Click this coloured text to go to the 'sticky'
    I don't know everything. - But I'm good at searching for, and finding, stuff.

    Migration from ESA to Universal Credit- Click here for information.

  6. #6
    Senior Member nukecad's Avatar
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    Hi,

    I posted a reply in your other thread, as Carl30 had already answered there.

    There is no need to ask your question more than once, it will get picked up off just the one.

    It is also easier to follow all the answers if you keep it in just the one place.


    EDIT
    Looks like the two threads have now been merged by a moderator.
    Last edited by nukecad; 07-06-15 at 20:23.
    I don't know everything. - But I'm good at searching for, and finding, stuff.

    Migration from ESA to Universal Credit- Click here for information.

  7. #7
    Hi there yes am in process of reconsideration also received my atos report what a joke I thought they were discussing someone else there was quite a few mistakes they made I also sent them 6 letters from the RVI at Newcastle about friederchs ataxia from my consultation whom I see yearly and I have a good examination but I don't think they looked at them as on report it only states
    Pip how your disability affects you
    GP letter received

  8. #8
    Senior Member nukecad's Avatar
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    Doctors letters, hospital reports, etc. are only useful up to a point in support of your claim.

    The emphasis of the assessment is how your condition affects your daily life.
    (A particular condition can affect different people in different ways).

    It is up to you, yourself, to convince them that you are unable to manage certain tasks.

    Again I strongly advise that you read the sticky thread.
    I don't know everything. - But I'm good at searching for, and finding, stuff.

    Migration from ESA to Universal Credit- Click here for information.

  9. #9
    Ok thanks I am going to do that now

  10. #10
    Wasn't sure if I clicked correct link as I am new to this

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