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  1. Replies
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    I'm sorry to read that Emma, it must be very...

    I'm sorry to read that Emma, it must be very difficult for you all.

    Hopefully your Mum has good community nursing care, including hospice at home if available, to support her needs.

    Take care....
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    Wonderful, Debbie (or a slight mispelling of the...

    Wonderful, Debbie (or a slight mispelling of the word, as our lovely friend would say ;);))

    I can imagine those videos ending up on Harry Hill's TV show, giving us all a laugh!

    Hope the...
  3. Thread: Serious question

    by Ellie
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    286

    Well, that Doctor told a porkie in the, "no...

    Well, that Doctor told a porkie in the, "no surgeon would do that [triple op]". Peter Scott-Morgan, for one, had it done in a regular NHS hospital and I'm nearly sure at least one Forum member's...
  4. Thread: Going backwards

    by Ellie
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    Short of sticking a loo roll in your mouth, the...

    Short of sticking a loo roll in your mouth, the only sure way I'm aware off to reduce saliva production is by taking specific meds, I'm afraid.

    I take glycopyrronium but hyoscine, atropine and...
  5. Thread: Ric feed

    by Ellie
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    340

    Hi Matthew, There are a few different ways of...

    Hi Matthew,

    There are a few different ways of fitting a gastrostomy (a feeding tube into the stomach through the skin) namely PEG, RIG, PIG/PRG.

    all procedures have the same outcome, a feeding...
  6. Thread: Ric feed

    by Ellie
    Replies
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    340

    Jackie, if Andy has trouble swallowing, even...

    Jackie, if Andy has trouble swallowing, even slightly, or there's a fear he may soon develop issues then a feeding tube is suggested, or breathing capacity is an issue.

    The main benefits of...
  7. Thread: Chest pain

    by Ellie
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    351

    Well, I'm about 240km / 150miles SW of the...

    Well, I'm about 240km / 150miles SW of the Scottish border, which is probably a lot closer than many UK members are :)
    I'm in Dublin.

    Hope Andy had a good night.

    Love Ellie.
  8. Replies
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    Hi Emma. I'm sure that MND Connect will soon...

    Hi Emma.

    I'm sure that MND Connect will soon reply to you, but I just wanted to welcome you to the Forum, although I am sorry it's in such sad circumstances.

    When you say your mum is in...
  9. Thread: Anniversary

    by Ellie
    Replies
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    Happy Anniversary Christoff :D Long may your...

    Happy Anniversary Christoff :D

    Long may your slow progression continue.

    Stay safe. Stay well. Stay upright.

    Cheers,
    Ellie X
  10. Thread: Lost

    by Ellie
    Replies
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    Yes Tess, better out than in, for sure, and I'm...

    Yes Tess, better out than in, for sure, and I'm sure you provided some entertainment to some people in a boring queue in the bank :)

    I always feel better after a good old sob - resets my...
  11. Thread: Panniertank

    by Ellie
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    Sorry Doug, can't help you on this. If you're...

    Sorry Doug, can't help you on this.

    If you're worried for her wellbeing or for safeguarding, it might be worth contacting MND Connect.

    Love Ellie.
  12. Thread: Brave or stupid?

    by Ellie
    Replies
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    382

    You know what mate, life's too short to not be as...

    You know what mate, life's too short to not be as happy as possible for as long as possible...

    Sounds like you've got it figured out - good luck to you.
  13. Thread: One good thing

    by Ellie
    Replies
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    30k in the bank Matthew and a new pad - the...

    30k in the bank Matthew and a new pad - the lay-dees (or men) will be queueing up for you

    :D:D
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    Oh that's a big improvement Hayls!! Although...

    Oh that's a big improvement Hayls!!

    Although it's less of a woohoo and more of a wheeee :D:D

    Thanks for being our test dummy and I know you'll give us the real facts, warts & all!

    Love...
  15. Thread: Lost

    by Ellie
    Replies
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    What a lovely post Tess. I totally agree that...

    What a lovely post Tess. I totally agree that counselling can be a lifesaver.

    I had 6 months soon after diagnosis and although I spent the first few sessions depleting the therapist's stock of...
  16. Thread: Chest pain

    by Ellie
    Replies
    4
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    351

    Hi Jackie, This only happens when Andy uses...

    Hi Jackie,

    This only happens when Andy uses BiPAP?

    Does he feel comfortable with the BiPAP setting, as in he doesn't feel forced into a breathing pattern or that he's almost gulping in air?
    ...
  17. Thread: Motability

    by Ellie
    Replies
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    I feel for you Jacqui and I understand your...

    I feel for you Jacqui and I understand your dilemma about spending money on something which may soon become unusable.

    Does your OT know you well? You could ask them for an opinion - not about...
  18. Thread: This forum

    by Ellie
    Replies
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    Roll on that Eyegaze, Will - it'll make a huge...

    Roll on that Eyegaze, Will - it'll make a huge difference to you.

    Love Ellie.
  19. Replies
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    Oh Hayls, why are things never bloody easy for...

    Oh Hayls, why are things never bloody easy for us??

    I hope you get an answer from someone with first-hand experience but in the meantime, could it be your bladder spasming because it's complaining...
  20. Thread: This forum

    by Ellie
    Replies
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    1,485

    Happy Sunday, Matthew That's the way forums...

    Happy Sunday, Matthew

    That's the way forums seem to be. Even on the much-bigger US forum, you see the same people popping up all the time for reasons outlined above.

    I guess it mirrors life ...
  21. Thread: inbox

    by Ellie
    Replies
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    Hi Miranda, Just to let you know that your...

    Hi Miranda,

    Just to let you know that your Inbox is full, in case you don't know.

    Love Ellie.
  22. Thread: Lost

    by Ellie
    Replies
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    Jackie, Good to hear the hospice is involved...

    Jackie,

    Good to hear the hospice is involved and that Andy responded well to overnight BiPAP. Do you think he would benefit from using his BiPAP for a bit during the day too?

    I too had...
  23. Thread: Lost

    by Ellie
    Replies
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    2,013

    Graham, That is an outrageously horrible post ...

    Graham,

    That is an outrageously horrible post :mad:

    You have sunk to a new low.

    Jackie, please ignore that offensive rubbish - I'm sorry you had to read it.
  24. Replies
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    David, I do the same with my pump feed most days ...

    David, I do the same with my pump feed most days - well, the backpack is on the back of my wheelchair not on my own back, letting me pootle around whilst getting my calories :)
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    I don't want to diss your solution but be aware...

    I don't want to diss your solution but be aware that taking Riluzole with fat lessens its uptake, i.e. you're not getting its full bioavailability, and we need every bit of help we can get, right!!
    ...
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