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Type: Posts; User: Devonmaid

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  1. Replies
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    MND has taken my lovely husband

    Sadly my darling Tony died in hospital yesterday of sepsis and pneumonia, brought on by F...... MND. He was very brave and able to say goodbye to his loved ones before slipping into a peaceful...
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    3,834

    So sad to hear this - you have been through such...

    So sad to hear this - you have been through such a tough time, but you looked after him very well, be proud of that and take care xxxx
  3. Replies
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    My husband had his test done at home. I had to...

    My husband had his test done at home. I had to post the equipment which had the relevant data on it. We then had a home visit by the respiratory specialist nurse who can also did arterial bloods...
  4. Thread: Ventilation

    by Devonmaid
    Replies
    173
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    18,724

    Hi Ellie As you know with MND things can change...

    Hi Ellie
    As you know with MND things can change by the day. As long as his weight is maintained etc we will cope. We will definitely look at overnight feeds if needed though. At the moment I put...
  5. Thread: Ventilation

    by Devonmaid
    Replies
    173
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    18,724

    My husband was nauseous when I put fluids and...

    My husband was nauseous when I put fluids and fortisips through his syringe into his PEG. He now has 1000 litres, water, medications and flushes and 2 feeds a day through his PEG. I start from 7am...
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    Hi Helen Sorry for late response. I wasn't...

    Hi Helen

    Sorry for late response. I wasn't alerted that you had responded to me and we have had a rough few weeks with Tony. You can always reapply for continuing healthcare as your mum's needs...
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    1,599

    You poor thing - what a worry - however, although...

    You poor thing - what a worry - however, although I am not medically qualified I would state it is very unusual (in early stages) to have that sort of pain in MND. I am sure you are very anxious to...
  8. Replies
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    Good to get the PEG in early. Tony is now using...

    Good to get the PEG in early. Tony is now using it for all meds and lots of fluids and x2 meals a day. He is now on thickened fluid and a pureed diet. He had no real problems post op. Take care
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    My husband is on his second lot of antibiotics in...

    My husband is on his second lot of antibiotics in 2 weeks for a chest infections. The only side effect he has been getting is diarrhoea (pretty minor normally, but as he is paralysed from the neck...
  10. Thread: Pain/Agony

    by Devonmaid
    Replies
    48
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    6,356

    chest infections can cause a lot of pain. Tony...

    chest infections can cause a lot of pain. Tony has been eating and drinking things he should'nt have and ended up in A&E this week with aspirational pneumonia. He was getting a lot of pain in his...
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    Looks like it was a special funeral - a perfect...

    Looks like it was a special funeral - a perfect send off for your beloved Mick - I am sure it gave all his family and friends great comfort. Take Care Sheila xxxx
  12. Thread: Flail arm

    by Devonmaid
    Replies
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    4,289

    My husband has flail arm MND. It started with...

    My husband has flail arm MND. It started with fasciculations in his arms and then his right arm lost strength - he was struggling to lift it etc and then in December 2016 he was carrying 2 drinks at...
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    I really feel for you. You are having such a...

    I really feel for you. You are having such a rough time. You do need to think of the future. In my area we have complexes with flats you can rent or buy. They are set up for disabled people with...
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    My husband has continuing healthcare if you want...

    My husband has continuing healthcare if you want any info/advice. This pays for 2 carers every morning for an hour and a 4 hour sitting service on a Monday so I can go out. We could have had...
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    so sorry - she was a lovely lady

    so sorry - she was a lovely lady
  16. Replies
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    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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    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....
  18. Thread: Fed up

    by Devonmaid
    Replies
    74
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    11,206

    Great to hear you got the CHC - you deserve it

    Great to hear you got the CHC - you deserve it
  19. Replies
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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...
  20. Thread: Fed up

    by Devonmaid
    Replies
    74
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    11,206

    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...
  21. Replies
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    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...
  22. 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
  23. Replies
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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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