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  1. Thread: Brave or stupid?

    by Ellie
    Replies
    6
    Views
    125

    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.
  2. Thread: One good thing

    by Ellie
    Replies
    4
    Views
    199

    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
  3. Replies
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    695

    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...
  4. Thread: Lost

    by Ellie
    Replies
    24
    Views
    1,467

    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...
  5. Thread: Chest pain

    by Ellie
    Replies
    2
    Views
    94

    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?
    ...
  6. Thread: Motability

    by Ellie
    Replies
    12
    Views
    844

    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...
  7. Thread: This forum

    by Ellie
    Replies
    20
    Views
    1,203

    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.
  8. Replies
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    695

    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...
  9. Thread: This forum

    by Ellie
    Replies
    20
    Views
    1,203

    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 ...
  10. Thread: inbox

    by Ellie
    Replies
    12
    Views
    3,785

    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.
  11. Thread: Lost

    by Ellie
    Replies
    24
    Views
    1,467

    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...
  12. Thread: Lost

    by Ellie
    Replies
    24
    Views
    1,467

    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.
  13. Replies
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    422

    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 :)
  14. Replies
    2
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    219

    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!!
    ...
  15. Thread: ?

    by Ellie
    Replies
    2
    Views
    223

    Like ET, do you mean :confused::confused:

    Like ET, do you mean :confused::confused:
  16. Thread: Lost

    by Ellie
    Replies
    24
    Views
    1,467

    Oh Jackie, I'm so sorry to read what both you...

    Oh Jackie, I'm so sorry to read what both you and your beloved Andy have been through. There is no easy answer to the "Why him" question, I'm afraid.

    As if Andy's diagnosis weren't bad enough,...
  17. Thread: Lesson learned

    by Ellie
    Replies
    3
    Views
    260

    I love your idea of what counts as "fun" 🤣🤣🤣

    I love your idea of what counts as "fun"

    🤣🤣🤣
  18. Replies
    7
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    422

    Just to educate you a bit more Matthew :D:D It...

    Just to educate you a bit more Matthew :D:D It often depends on your hospital as to what procedure you have and what feeding tube you're given, but knowledge is everything so it's good to know...
  19. Replies
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    422

    I definitely recommend the button feeding tube...

    I definitely recommend the button feeding tube David.

    They come in different internal lengths and widths, so you'll be measured and given the right sized one for you.

    I've the Mic-Key button,...
  20. Thread: Swallowing pills

    by Ellie
    Replies
    8
    Views
    568

    In the meantime, try taking the Riluzole in a tsp...

    In the meantime, try taking the Riluzole in a tsp of thick yoghurt, jam, honey etc.

    Liquid Riluzole is much more expensive than its tablet form, so expect the GP to try fobbing you off but it is...
  21. Replies
    405
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    48,353

    Oh the things we now celebrate :eek::D Is it...

    Oh the things we now celebrate :eek::D

    Is it a dual motor armchair?
  22. Thread: My future

    by Ellie
    Replies
    3
    Views
    444

    You'll find another use for door handles, taps,...

    You'll find another use for door handles, taps, table edges and the likes - they double up as scratching posts :D

    I make sure my skin is well moisturised to reduce itchy moments and stay well...
  23. Replies
    19
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    695

    Oh. My. Days.... How to make a girl feel good ...

    Oh. My. Days.... How to make a girl feel good :eek: :D :D

    I know what they mean - it's more straightforward to cut through thin fat layers.

    Best of luck.
  24. Gosh MMW, how awful for you - I'm sorry for...

    Gosh MMW, how awful for you - I'm sorry for your woes.

    Love Ellie.
  25. Thread: Bookworm Quiz

    by Ellie
    Replies
    1
    Views
    329

    Nice one, Fiona!

    Nice one, Fiona!
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