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  1. Replies
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    Hi Lynne, I'm sorry you're having to use your...

    Hi Lynne,

    I'm sorry you're having to use your powerchair full-time now - it's a horrible slap in the face for you :(

    Yes, it does downgrade your independence but a bad fall could set you...
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    Christine, before you go spending money, this...

    Christine, before you go spending money, this video might give you a better idea if the total face mask would work for Douglas (or not!)


    https://www.youtube.com/watch?v=T0zJRNCWAG8
  3. Thread: New

    by Ellie
    Replies
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    4,735

    See the row of icons, the click on the square...

    See the row of icons, the click on the square one, choose file and upload pic.

    If you can't Jo Jo, don't stress yourself out over it!!

    It sounds fine.

    Love Ellie.
  4. Thread: New

    by Ellie
    Replies
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    4,735

    Can you post a pic of it Jo Jo before you spend...

    Can you post a pic of it Jo Jo before you spend your 40 quid??
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    Chrissie, This is the mask I wear in bed - ...

    Chrissie,

    This is the mask I wear in bed - Total Face Mask by Respironics - no contact with the nose and supremely comfortable. Maybe it'd suit Doug? (not great if he had to wear it during...
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    Oh I understand, Christine. I am still amazed,...

    Oh I understand, Christine.

    I am still amazed, well appalled really, that nobody can find a comfortable mask for Douglas :(

    He may be able to get a naso-gastric (NG) tube if he wants to feed,...
  7. Thread: Hello from me

    by Ellie
    Replies
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    335

    Hi Lesley and welcome to the Forum. Sorry to...

    Hi Lesley and welcome to the Forum.

    Sorry to hear of your mum's recent diagnosis.

    I know you want to wrap her up in cotton wool but she obviously has other ideas :) Good for her going to see...
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    Oh Christine, I am so sorry to hear of Doug's...

    Oh Christine, I am so sorry to hear of Doug's situation and how that all affects you.

    What was the issue with the Nippy that prompted the need for reassessing?

    If that hospice doesn't know...
  9. Replies
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    That's great news, Doug. Hope the MNDA...

    That's great news, Doug.

    Hope the MNDA 'consider' your case positively and swiftly !!

    Good luck.

    Love Ellie.
  10. Replies
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    Hi Helen, That's a great idea about listening...

    Hi Helen,

    That's a great idea about listening to audiobooks whilst your mum uses the NIV during the day.

    Having 2 teenage children, I've got a wide choice of earphones & headphones !
    ...
  11. Replies
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    No, TAPG1, I've just developed a different...

    No, TAPG1, I've just developed a different perspective on life, having lived this long with ALS/MND !!
  12. Thread: So so tired

    by Ellie
    Replies
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    Hello dear Terry. I hope your back pain is...

    Hello dear Terry.

    I hope your back pain is less today and you've a bit of energy too?

    Love Ellie.
  13. Replies
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    Terry, I am a bit confused :confused: ...

    Terry,

    I am a bit confused :confused:

    You're an Adjunct Professor in the Arts, Theatre & Dance department - what course are you suggesting we do??

    Ellie.
  14. Replies
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    Sarah, I definitely don't know everything :D ...

    Sarah, I definitely don't know everything :D but I don't see the point not sharing the tips & tricks I've learned living with MND, in the hope they'll help somebody, somehow....

    I guess I'd zero...
  15. Thread: So so tired

    by Ellie
    Replies
    45
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    7,067

    Oh I am so glad it's done now Sheila - hope...

    Oh I am so glad it's done now Sheila - hope you're proud of yourself, I know I'm proud of you :)

    Yes, it certainly is strange having these things but they really do help us and, let's face it,...
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    Thanks for the update and I'm so glad that you...

    Thanks for the update and I'm so glad that you seem to have clicked with the psychiatrist.

    TAPG1, please don't feel any shame whatsoever in needing to take antianxiety meds (no need for crying...
  17. Thread: So so tired

    by Ellie
    Replies
    45
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    7,067

    Hayls, if it's a sudden change, it's always wise...

    Hayls, if it's a sudden change, it's always wise to have yourself checked out in case an infection is responsible.

    Love Ellie.
  18. Thread: What toilet?

    by Ellie
    Replies
    3
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    330

    Hi Hunter, Closomats seem to be installed...

    Hi Hunter,

    Closomats seem to be installed more often than the Geberit for some reason and, if they come with the foot control, that seems the logical way to go. And good to hear that Shrew's...
  19. Thread: So so tired

    by Ellie
    Replies
    45
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    7,067

    Hi Hayls, Yes indeed there are days when we...

    Hi Hayls,

    Yes indeed there are days when we can't summons the energy to do much.... It's best to conserve our energy for good things. Do you ever take a nap in the afternoon to recharge?

    To...
  20. Thread: So so tired

    by Ellie
    Replies
    45
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    7,067

    Sorry to hear your energy is low Terry - pain...

    Sorry to hear your energy is low Terry - pain can be draining on even the fittest person, so it could be that you're just exhausted by enduring pain?

    I am sorry to bring this up, and you'll know...
  21. Thread: MND Symptoms

    by Ellie
    Replies
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    1,364

    Thanks for taking the time to update us Stuart. ...

    Thanks for taking the time to update us Stuart.

    I hope you can focus on your wellbeing now - make sure you're well hydrated, eat well, sleep well and get fresh air.

    Treat yourself too - ...
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    Hi Sarah, The collar on order for you sounds...

    Hi Sarah,

    The collar on order for you sounds like the HeadUp (Sheffield Snood) which I have and absolutely love!! Itís not scary at all and for me anyway, is by far the best of the 5 Iíve worn...
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    "Part 1: Community rules The forum is an...

    "Part 1: Community rules

    The forum is an online community for people living with or affected by MND to share experiences and support one another."

    We do try help everyone, but there does come a...
  24. Replies
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    I have to politely disagree with you Terry - ...

    I have to politely disagree with you Terry - threads like this only add fuel to people's (already crippling) anxieties, which isn't a positive thing :(

    Love Ellie.
  25. Thread: Jordan farrell

    by Ellie
    Replies
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    3,919

    You left out the important bit of the quote !!! ...

    You left out the important bit of the quote !!! The after 13 years of learning bit...

    I wasn't born with this knowledge :)

    Love ya.
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