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  1. Replies
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    Oh Debbie, that's hilarious, I can just picture...

    Oh Debbie, that's hilarious, I can just picture the scene :D:D

    Love Ellie.
  2. Thread: Rch4

    by Ellie
    Replies
    287
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    77,509

    IONEL, You have joined this Forum simply to...

    IONEL,

    You have joined this Forum simply to tell us all how wonderful this elusive product is, knowing full well that not one person reading your effusive post will be able to source the product...
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    Great song TC but did you ever listen to its...

    Great song TC but did you ever listen to its lyrics? Quite explicit to play to a bride-to-be, or maybe that was your last ditch plan to have her call off the wedding ;)

    Any idea if your windy...
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    I'll bet you are bored Dina :( Any fun...

    I'll bet you are bored Dina :(

    Any fun happening on the ward? There's only so much "I spy" one can handle!!

    Mind you, with Sunday afternoon visitors piling onto the ward, you may have some...
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    Hi Andy, A comprehensive list would make for...

    Hi Andy,

    A comprehensive list would make for sombre reading, I’m afraid, and wouldn’t cover half the things one could imagine will be impacted by having useless hands & arms :(:(

    From using...
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    PS Sue, I keep a box of masks in case anyone...

    PS Sue, I keep a box of masks in case anyone arrives at my house with even a sniffle.

    The care company and all my carers know that a chest infection can kill me - it’s in my care plan - and...
  7. Thread: Flu vaccination

    by Ellie
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    195

    For the Newbies: You should also get the...

    For the Newbies:

    You should also get the PPV23 pneumococcal vaccine for community acquired bacterial pneumonia - it cannot offer protection against aspiration pneumonia.

    It's a once off...
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    Hi Sue, I’ve been on that same feed for 10...

    Hi Sue,

    I’ve been on that same feed for 10 years and never had any problems.

    If it’s not diabetes, I “assume” they’ve run full blood and checked organ function, especially liver and kidney...
  9. Thread: Duty of care?

    by Ellie
    Replies
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    2,078

    Just checking Dina; The anaesthetist will be...

    Just checking Dina;

    The anaesthetist will be present during the PEG procedure to monitor your vitals and not because you're having a GA? (I know you said before that you'll be using the Nippy...
  10. Thread: Hi Everyone

    by Ellie
    Replies
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    527

    Adam, do you wear a neck support? The right one...

    Adam, do you wear a neck support? The right one should stop your neck from getting sore.

    Sorry the trial didn't work out for you.

    Love Ellie.
  11. Thread: Ibudilast

    by Ellie
    Replies
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    I'm sorry to hear that Jerry. Do you know on...

    I'm sorry to hear that Jerry.

    Do you know on what basis the Edaravone was impounded? I'd ask whomever it takes to get it released - I thought one can import a 3 month supply of meds for...
  12. Thread: Hi Everyone

    by Ellie
    Replies
    8
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    527

    Hi Adam and a warm wwlcome to you. It sounds...

    Hi Adam and a warm wwlcome to you.

    It sounds as if you're well supported and set up, apart from the small matter of sorting out where to live...

    Are you looking for CHC, or maybe you already...
  13. Hi Dina, FTD is FrontoTemporal Dementia - ...

    Hi Dina,

    FTD is FrontoTemporal Dementia - oh yes, MND is the gift which keeps on giving...

    This is from the MNDA main website, I thought it might be easier for you if I copied and pasted...
  14. Thread: Exercise/physio

    by Ellie
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    373

    Hi Beatz, If you're lucky, there'll be a good...

    Hi Beatz,

    If you're lucky, there'll be a good NHS Physiotherapist in your area - some people don't have a physio, some people have one but may as well not!!!

    Ask your GP, or do you have an...
  15. Thread: Duty of care?

    by Ellie
    Replies
    30
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    2,078

    Hi Dina, I know you'd rather be at home with...

    Hi Dina,

    I know you'd rather be at home with carers but I am glad you're being looked after, which must be a relief for bouth you and your partner and lower the stress levels.

    It does make...
  16. Thread: Duty of care?

    by Ellie
    Replies
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    2,078

    So sorry for your horrific treatment Dina - ...

    So sorry for your horrific treatment Dina - simply OUTRAGEOUS :mad::mad:

    Social Services have a statutory obligation to protect vulnerable adults.

    You should probably contact MND Connect...
  17. Thread: Pain/Agony

    by Ellie
    Replies
    48
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    2,773

    Hi Lynne, Sorry for butting in !! Maybe ask...

    Hi Lynne,

    Sorry for butting in !!

    Maybe ask your SLT for a videoflouroscopy swallowing assessment ?

    It's a live X-ray video of you eating, for example, barium infused yoghurt, crumby biscuit...
  18. Thread: Pain/Agony

    by Ellie
    Replies
    48
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    2,773

    Hi Chrissie, So glad your Gran has recovered...

    Hi Chrissie,

    So glad your Gran has recovered well and is back in the nursing home.



    In ALS/MND, a feeding tube is not associated with an increased risk of aspiration, but it does decreases...
  19. Thread: Pain/Agony

    by Ellie
    Replies
    48
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    2,773

    Hi Devonmaid, Sorry to hear Tony has...

    Hi Devonmaid,

    Sorry to hear Tony has aspiration pneumonia - would he consider getting a feeding tube or has one been mentioned because of the aspiration?

    Hope he recovers quickly from the...
  20. Thread: collection

    by Ellie
    Replies
    9
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    596

    That's lovely to hear Shrew - a fitting legacy...

    That's lovely to hear Shrew - a fitting legacy in Mick's name.

    Thanks for letting us know.

    Love Ellie.
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    Yep TC, that Bepanthen cream is great stuff. ...

    Yep TC, that Bepanthen cream is great stuff.

    Still used by the kids, but now for things such as shin guard irritation.

    Love Ellie.
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    Doug, Noooo! That was supposed to be our...

    Doug, Noooo!

    That was supposed to be our little secret - :mad::mad: SMH...
  23. Replies
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    85,264

    No Bond Girl role for me please. I'd much...

    No Bond Girl role for me please.

    I'd much rather play a Baddie ;):D - like Fiona Volpe, the S.P.E.C.T.R.E assassin in Thunderball.

    1060

    I couldn't play a Good Girl, even for an Oscar.
    ...
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    Doug, you're a definite 007 contender going by...

    Doug, you're a definite 007 contender going by your avatar :D Cool, suave and sophisticated...
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    Kayleigh, my kids are teenagers so I use...

    Kayleigh, my kids are teenagers so I use abbreviations a lot - text acronyms and abbreviations are very useful for eye gaze users and for those with limited hand function :D
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