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  1. 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.
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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 !
    ...
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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 !!
  4. Thread: So so tired

    by Ellie
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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.
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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.
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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...
  7. Thread: So so tired

    by Ellie
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    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...
  9. Thread: So so tired

    by Ellie
    Replies
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    6,134

    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.
  10. Thread: What toilet?

    by Ellie
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    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...
  11. Thread: So so tired

    by Ellie
    Replies
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    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...
  12. Thread: So so tired

    by Ellie
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    6,134

    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...
  13. Thread: MND Symptoms

    by Ellie
    Replies
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    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...
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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.
  17. Thread: Jordan farrell

    by Ellie
    Replies
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    3,537

    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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    That's extra stress you just don't need, Will ...

    That's extra stress you just don't need, Will :mad:

    I was lucky insofar as my policy specified ALS.

    Hope they pay out and you don't have to go down the whole appeals route.

    Love Ellie.
  19. Thread: Jordan farrell

    by Ellie
    Replies
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    3,537

    Jordan, I posted this on a different thread, but...

    Jordan, I posted this on a different thread, but it is fitting for you also. I mean it in a helpful way only, not in any way dismissive.

    What worries me about your situation is that you’re so...
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    What worries me about your situation TAPG1 is...

    What worries me about your situation TAPG1 is that you’re so focused on MND being the only possible reason for your symptoms, that you’ve fallen down a rabbit hole from which it’s very difficult to...
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    Yes it's a different test - it's the thyroxine...

    Yes it's a different test - it's the thyroxine (T4) level, not just the free T4 and may help give an overview of what's happening, for example, thyroid or pituitary involvement. (FT4 measures...
  22. Thread: Pip

    by Ellie
    Replies
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    Yes Terry, I am quite sure you both could do...

    Yes Terry, I am quite sure you both could do without that form-filling and the stress of waiting for the decision :(

    I wonder what planet the assessors live on :confused:

    Love Ellie.
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    I'm sorry to hear that Kate. As you say, the OT...

    I'm sorry to hear that Kate. As you say, the OT is often the key worker in a community team and to remove their regular input defies logic, as well as economic sense because being proactive is...
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    Hi Andy, My FT4 and TSH regularly come back...

    Hi Andy,

    My FT4 and TSH regularly come back within normal range.

    Was your 'Se Thyroxine T4' measured too, as in is it printed on the results page?

    Either way, ask your GP if it's something...
  25. Thread: MND Symptoms

    by Ellie
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    I think only ballet dancers can balance on their...

    I think only ballet dancers can balance on their heels :D:D
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