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  1. Thread: inbox

    by Ellie
    Replies
    12
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    3,637

    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.
  2. Thread: Lost

    by Ellie
    Replies
    15
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    462

    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...
  3. Thread: Lost

    by Ellie
    Replies
    15
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    462

    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.
  4. 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!!
    ...
  6. Thread: ?

    by Ellie
    Replies
    2
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    109

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

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

    by Ellie
    Replies
    15
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    462

    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,...
  8. Thread: Lesson learned

    by Ellie
    Replies
    3
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    185

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

    I love your idea of what counts as "fun"

    🤣🤣🤣
  9. Replies
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    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...
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    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,...
  11. Thread: Swallowing pills

    by Ellie
    Replies
    8
    Views
    484

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

    Oh the things we now celebrate :eek::D

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

    by Ellie
    Replies
    3
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    380

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

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

    Love Ellie.
  16. Thread: Bookworm Quiz

    by Ellie
    Replies
    1
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    263

    Nice one, Fiona!

    Nice one, Fiona!
  17. Replies
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    444

    Thanks Kate. Will the procedure be done with...

    Thanks Kate.

    Will the procedure be done with local anaesthetic or a light general?

    Love Ellie.
  18. Replies
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    There is no such thing as "giving up too easily",...

    There is no such thing as "giving up too easily", just do what's right for you :)

    I go to the loo several times per day Hayls but I have carers, so, for me right now, it's very doable.

    I know...
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    Jojo, you need to consider yourself too - if...

    Jojo, you need to consider yourself too - if you injure yourself, you'd both be in trouble, your partner would have nobody to help him. and you'd be laid up with a back injury :( You're in this...
  20. Thread: Opinions please

    by Ellie
    Replies
    7
    Views
    532

    Oh I can empathise! My jaw hangs too but my...

    Oh I can empathise!

    My jaw hangs too but my upper teeth overhang my lower teeth, so I only chomp my cheeks when I sneeze :) I wear a light gumshield in bed, which my dentist made, and I guess...
  21. Thread: Opinions please

    by Ellie
    Replies
    7
    Views
    532

    MND Connect are off until Tuesday, Matthew. ...

    MND Connect are off until Tuesday, Matthew.

    May I ask in the meantime - in what way are they driving you mad(I hope you're not in pain...) and are you talking about having all of the other 3...
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    Jojo, if he struggles getting out of bed, would...

    Jojo, if he struggles getting out of bed, would your partner consider getting a profiling/hospital bed?

    I know they're not everyone's cup of tea - I resisted for a long while myself!! - but...
  23. Replies
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    464

    The length of time to get a diagnosis varies...

    The length of time to get a diagnosis varies widely Matthew, as there are several contributing factors to the whole process, such as symptoms, waiting times for consultant and diagnostic tests, the...
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    Thanks for that. Are you happy with how it...

    Thanks for that.

    Are you happy with how it turned out?
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    9,877

    Great to hear that, Miranda. Do you have the...

    Great to hear that, Miranda.

    Do you have the free version or did you upgrade and customise?

    As an FYI to others, it's also available for Android.

    Love Ellie.
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