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Type: Posts; User: Devonmaid

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  1. Replies
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    so sorry - she was a lovely lady

    so sorry - she was a lovely lady
  2. Replies
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    1,474

    Our local neurologist didn't know what my husband...

    Our local neurologist didn't know what my husband had. EMG and electrical conduction tests didn't identify MND/ALS. He was treated for multi focal motor neuropathy and steroids but neither worked. ...
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    780

    Hi My husband has CHC funding. This pays for...

    Hi

    My husband has CHC funding. This pays for a package of care, sitting service and if he needs it a nursing home. It doesn't fund equipment etc which an OT or physio would have to sort out....
  4. Thread: Fed up

    by Devonmaid
    Replies
    74
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    9,094

    Great to hear you got the CHC - you deserve it

    Great to hear you got the CHC - you deserve it
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    I am glad you found this forum so helpful. ...

    I am glad you found this forum so helpful. Awaiting diagnosis is so hard and seems to take so long. I really hope that your husband has something treatable - it sounds like MND isn't so likely...
  6. Thread: Fed up

    by Devonmaid
    Replies
    74
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    9,094

    Sorry to hear you are having such a tough time. ...

    Sorry to hear you are having such a tough time. My husband recently got CHC awarded. He got severe for breathing because although he won't wear it at night he should be using NIV and also for pain...
  7. Replies
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    6,957

    My husband's lost his sense of taste a few years...

    My husband's lost his sense of taste a few years before his diagnosis or any symptoms. His taste has changed since having MND. He never had a sweet tooth but now doesn't really like savoury things...
  8. Replies
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    Yes Andy - thanks - it was a shot in the dark, I...

    Yes Andy - thanks - it was a shot in the dark, I think Tony is too paralysed, but glad it helps you
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    My husband is also very high risk and sleeps on...

    My husband is also very high risk and sleeps on his back. He has an airwave mattress and profile bed supplied by OT from NHS and loves his bed. Also is it free and they will assess you for exactly...
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    My husband had to give up driving in June 2017...

    My husband had to give up driving in June 2017 the same week he gave up work. He just wasn't safe. He did try a gadget on the steering wheel to make it turn easier, but sadly that didn't help for...
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    Hi Sheila My husband Tony was diagnosed in...

    Hi Sheila

    My husband Tony was diagnosed in October 2017 with MND which started in his arms. I know a lot of people are relieved when they get an actual diagnosis, but we were devastated. My...
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    Hi Andy My husband's arms as well as his hands...

    Hi Andy

    My husband's arms as well as his hands no longer work - would these gloves help him in these circumstances?

    Thanks
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    Have you thought of contacting your MP to speed...

    Have you thought of contacting your MP to speed things up about seeing your son?
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    Hi Pinkelle. I have been thinking about you. Is...

    Hi Pinkelle. I have been thinking about you. Is the venue at a hotel - if yes maybe you could hire a room and a portable hoist? A bit expensive I know but maybe for peace of mind. I have also been...
  15. Hi - my husband was on PIP higher rate for daily...

    Hi - my husband was on PIP higher rate for daily living and lower rate for mobility. He was also on ESA and waiting for an assessment to see which group he would go in. Our MND specialist nurse in...
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    2,995

    I hope you have got something else, but obviously...

    I hope you have got something else, but obviously you are preparing for the worst. MND is a rubbish disease to get, but I find it particularly sad when younger people who have young children get it....
  17. Thanks very much everyone for your advice - this...

    Thanks very much everyone for your advice - this forum is the best
  18. How do you go to the loo whilst out in a wheelchair?

    Tony can still stand to use a disabled toilet whilst out, but his legs are getting weaker every day and soon when he is out he won't be able to stand up. I have a urinal bottle which we use at home...
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    I think people find it easier to live with MND if...

    I think people find it easier to live with MND if they are progressing slowly. My husband was working in a very physical job as a builder a year ago and driving and we had taken our caravan on...
  20. Thread: In denial

    by Devonmaid
    Replies
    27
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    5,375

    Hi Wend When you first find out that you or your...

    Hi Wend
    When you first find out that you or your loved one has MND it is really tough, but it does get better, although you cannot believe that at the moment. Although obviously life will never be...
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    How to store shopping in Berlingo

    Can people give me some ideas on how to put shopping etc in my WAV. I have a plastic box, but it isn't enough for a weekly shop and I have to place stuff carefully so the bags don't slide around in...
  22. Thread: Mirocals

    by Devonmaid
    Replies
    14
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    6,790

    My husband is also on the trial. He gets a skin...

    My husband is also on the trial. He gets a skin reaction and his arm is sore and aches after each injection, but he never feels unwell. He has only had 1 set of injections so far and I think he...
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    Hi We are not eligible for a grant either. ...

    Hi

    We are not eligible for a grant either. Savings too high (rapidly diminishing after paying for wet room, WAV car and new drive and pathway). I also earn too much but my employer (NHS would...
  24. Thread: Hello

    by Devonmaid
    Replies
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    2,164

    Hi Tanglewood My husband had a similar start and...

    Hi Tanglewood
    My husband had a similar start and symptoms to yourself. He is 65 so a bit older, bit looks at least 10 years younger and was fit as a fiddle before all this. I am 55. It is a...
  25. Thread: CHC Hell

    by Devonmaid
    Replies
    8
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    2,926

    Hi CC We don't have that medical leave here,...

    Hi CC

    We don't have that medical leave here, but the chief executive of my organisation is on some sort of leave as her husband is very ill so I will ask if I can have the same treatment as she is...
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