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  1. Thread: Mattress

    by marge
    Replies
    3
    Views
    2,037

    Mattress

    Morning everybody
    Not been on here for a little while hope everybody is as well as they can be.
    I am trying to find some decent info on a mattress for husbands profile bed.
    He currently just has a...
  2. Replies
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    15,702

    Cosyfeet are great. The slippers and and bed...

    Cosyfeet are great.
    The slippers and and bed socks are so warm and easy to get on.We have not had to return anything.
  3. Thread: Physio and Hydro

    by marge
    Replies
    13
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    2,524

    Hi Terry and Barry It gives me no comfort to...

    Hi Terry and Barry
    It gives me no comfort to know of others in the same situation.Our local hospice limit any treatments offered and its a major expedition to get there.That in itself is not...
  4. Thread: Physio and Hydro

    by marge
    Replies
    13
    Views
    2,524

    "It seems you are written off when you are...

    "It seems you are written off when you are diagnosed with MND."
    Sadly,I share your views on this one Sue.Our NHS physio left in Mar,has never been replaced.We pay for physio now.
    Its really quite...
  5. Replies
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    9,245

    Hi Caljake Is there no help with a stair lift? ...

    Hi Caljake
    Is there no help with a stair lift?
    We didn't have a wet room fitted(we decided to go with a close-o-mat)but we could not manage without a stair lift.It was one of the few things the OT...
  6. Replies
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    7,752

    And I have still not had any carer say they have...

    And I have still not had any carer say they have had a carers assessment completed.
    Does that mean nobody has had one completed?
  7. Replies
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    7,752

    Hi Pink You can claim carers allowance even if...

    Hi Pink
    You can claim carers allowance even if you work but given that you pay tax on it, you probably won't gain much.I no longer go out to work and claim.I could not claim until the PIP was in...
  8. Replies
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    Hi Marigold There are indeed NICE guidelines...

    Hi Marigold

    There are indeed NICE guidelines relating to diagnosis and the subsequent care that should be offered.Our experience was totally rubbish and we never quite recovered from that.The...
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    7,752

    Hi Terry I am not sure if the lack of responses...

    Hi Terry
    I am not sure if the lack of responses actually mean most carers have not had an assessment.I haven't by the way, nearly a year on now.
    I would also like to know how many people(when...
  10. Replies
    23
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    7,752

    Carers Assessment

    Hi everybody
    Have other carers had their carer assessment completed? If you have, who completed it?
    Thanks
    Marge
  11. Thread: As 150

    by marge
    Replies
    16
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    2,819

    That is such good news.

    That is such good news.
  12. Thread: As 150

    by marge
    Replies
    16
    Views
    2,819

    Thanks Hope the consultation helps whatever the...

    Thanks
    Hope the consultation helps whatever the outcome
  13. Thread: This is the End

    by marge
    Replies
    19
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    3,575

    Its great to see your post Andrew. Hope you are...

    Its great to see your post Andrew.
    Hope you are comfortable still.
  14. Thread: As 150

    by marge
    Replies
    16
    Views
    2,819

    Understandably and as much as people say don't...

    Understandably and as much as people say don't worry.......
    I wish you well and hopefully you will return and let us know it wasn't MND after all
  15. Thread: As 150

    by marge
    Replies
    16
    Views
    2,819

    I think it would be beneficial to see the MND...

    I think it would be beneficial to see the MND specialist and I know its a bit of pain having to pay(in addition to funding the NHS) but sometimes its the only way to see the specialist that you want....
  16. Thread: As 150

    by marge
    Replies
    16
    Views
    2,819

    Hi As150 Are you seeing a neurologist that...

    Hi As150
    Are you seeing a neurologist that specialises in MND?
    Given the length of time that you have had the symptoms I would like to think a competent Neurologist would be able to diagnose on a...
  17. Thread: This is the End

    by marge
    Replies
    19
    Views
    3,575

    I can only reiterate others comments Andrew.So...

    I can only reiterate others comments Andrew.So very sorry to hear of your decline.I really hope you can get comfortable and be where you want to be.
  18. Replies
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    Hi there Catsparkle I don't have MND(I am a...

    Hi there Catsparkle
    I don't have MND(I am a carer) but bras are the work of the devil and life is much more comfy without.Can you just manage with a cami top?
  19. Replies
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    Hi Mick If you wanted to read a good paper on...

    Hi Mick
    If you wanted to read a good paper on breathing then visit
    alsa.org
    They have lots of really informative papers.
  20. Replies
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    2,939

    Hi Mick You are right about the technique.We use...

    Hi Mick
    You are right about the technique.We use our own spirometer and readings vary quite a lot.
    When we visited the hospital, we found the Dr's were not that competent with the spirometer....
  21. Thread: Not a good day!

    by marge
    Replies
    62
    Views
    9,039

    Hi Jaxx Getting equipment when its too late is...

    Hi Jaxx
    Getting equipment when its too late is so annoying.
    I try really hard to anticipate what might be needed next but my experiences of OT are not so great.
    We have generally given up asking.
  22. Thread: Not a good day!

    by marge
    Replies
    62
    Views
    9,039

    Hi Pink I think it just highlights the postcode...

    Hi Pink
    I think it just highlights the postcode lottery really.
    Am so pleased your OT is helpful, you could ask for some leg lifters although they can a bit tricky to get over your foot.Longer than...
  23. Replies
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    Hi again Chris I have looked at a few sites and...

    Hi again Chris
    I have looked at a few sites and I think you should be able to make a claim for contribution based ESA.
    That is not affected by other benefits you receiveYou may need an assessment...
  24. Thread: Not a good day!

    by marge
    Replies
    62
    Views
    9,039

    Hi Pink I am suffering from OT envy!

    Hi Pink
    I am suffering from OT envy!
  25. Replies
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    3,261

    Hi Chris You can only claim PIP up to state...

    Hi Chris
    You can only claim PIP up to state retirement age.
    Over 65(at present) you wouldn't get PIP at all.
    PIP with the mobility element is more generous.
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