Hi, my name is cynders! — Scope | Disability forum
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Hi, my name is cynders!

cynders Member Posts: 14 Listener
I am dreadfully upset at the moment so blubbering a lot . Apologies, I will compose myself and return in a minute, thank you.


  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello @cynders, and welcome. I have just read your post 'Rare disease' and I understand only too well why you are upset. Now, though, I must look for ways to help you.
    Don't apologise for your distress. You're entitled to feel as you do and everybody here respects that.
    Your major concern at the moment appears to be about DLA/PIP and we have plenty of people and resources here which should be able to help you. For the moment, the best I think I can do is to point you to this link: https://community.scope.org.uk/categories/talk-about-pip-dla and suggest you have a look at it, see if there is anything there that helps.
    Whatever else happens, please stay in touch. People who know a lot more than I do about this will be along to help you.
    Warmest best wishes to you,

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @cynders, and welcome. I'm so sorry to hear that you're upset at the moment, I've just moved your rare disease post into a place where others are more likely to see it, and somebody will be along to advise ASAP. I really hope today is kinder to you.
  • cynders
    cynders Member Posts: 14 Listener
    Thank you. A lovely lady from glycogen storage disease group is helping also . Tony is very unwell today. After he received the PIP letter on Saturday , I thought he was going into another TIA .
    He has so much wrong with him ,bu the's worried he's not disabled enough . We rely on DLA , not jusr for the Motability car , but for mortgage and the heating as this is on all year .(Tony's on warfarin ,and his disease means his circulation is poor ) .Also he's doubly incontinent and we have the washing machine on constantly .
    I dont know if I've posted all that's wrong with him , so I'll do it now. btw , our heating packed up yesterday ,all repaired today but with a £244 bill !
    I'm his carer ,but I am also disabled .

    He has glycogen storage disease/cori's syndrome or Forbes disease.
    Insulin dep. diabetes
    Severe contractular cramps at night due to the GSD
    Enlarged liver
    Some bowel removed due to a mesenteric thrombosis
    1 stroke
    9 TIA'ss
    Ulcers between his toes
    High cholesterol 
    He's doubly incontinent as above
    Depression and loss of some hearing and memory loss.

    Also we have a form from a government tribunal from 1993 which states he's to have DLA mobility and care component 'for life'.
    I still have this , surely this is a legal document ? All signed ,stamped and all the names on that tribunal ?
    Thank you for reading all this. Scared stiff about Wednesday.


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