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  1. Replies
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    I'm so sorry your mum was brought to the brink...

    I'm so sorry your mum was brought to the brink Juliette. I cannot imagine the torment you were put through and you still have massive uncertaintity now re getting your beloved mum home.

    Is there...
  2. Thread: Pain/Agony

    by Ellie
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    8,422

    That's good to hear Hayls, you must be over the...

    That's good to hear Hayls, you must be over the moon. Thanks for the update.

    Hospices or specialist palliative care units are great places to go for symptom management and I'm glad you were...
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    Great news Debbie and thanks for posting in this...

    Great news Debbie and thanks for posting in this thread.

    Hope the chair is comfortable for you finally...

    Love Ellie.
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    Hi Shaun and a warm welcome to the Forum nobody...

    Hi Shaun and a warm welcome to the Forum nobody wants to join...

    Good to hear how you're getting on with life ! It's important to do all you can and what you enjoy - it's great for the spirit,...
  5. Thread: Nervous newbie

    by Ellie
    Replies
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    Hi Claire, I am sorry for your Superhero Dad's...

    Hi Claire,

    I am sorry for your Superhero Dad's diagnosis - I know I'd be devasted if my own dad got the same diagnosis (I'm a Daddy's girl :))

    Please feel free to ask questions, especially...
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    Tradazone Hydrochloride: ...

    Tradazone Hydrochloride: https://www.medicines.org.uk/emc/product/8881/smpc

    Memantine Hydrochloride: https://www.medicines.org.uk/emc/product/3312/smpc
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    Welcome to the Forum, Nicky. Love Ellie.

    Welcome to the Forum, Nicky.

    Love Ellie.
  8. Replies
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    Apart from Edinburgh, trial centres are: ...

    Apart from Edinburgh, trial centres are:



    Aberdeen
    Birmingham
    Cambridge
    Dundee
    Glasgow
    Inverness
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    Well Sarah, I'm so glad your wife's pestering...

    Well Sarah, I'm so glad your wife's pestering worked !! Thanks for sharing it.

    It's a beautiful poem which, I don't mind admitting, brought a tear to my eye... And I think all of us can...
  10. Energy Supply: Priority Services Register For People In Need

    I know this topic won't be new to some Forum users, but I'm reposting it in case the newer members are unaware it exists and as it's storm season !!

    If you are disabled or have a chronic/long-term...
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    It was great to see MND being the headline item...

    It was great to see MND being the headline item on the BBC's 6pm News.

    I think its focus on following the trial over the next few years is particularly beneficial and will keep MND in the news.
  12. Thread: Terry

    by Ellie
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    Hi Grandad Richard - nice to meet you! By...

    Hi Grandad Richard - nice to meet you!

    By the sound of it, Terry's pain seems to be brought under control or lessened substantially at least, which is great.

    He could get a dongle for a...
  13. Thread: Pain/Agony

    by Ellie
    Replies
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    8,422

    Oh Lynne, please don't ever think you're butting...

    Oh Lynne, please don't ever think you're butting in :( The more opinions and discussion the better :)

    Love Ellie.
  14. Thread: Pain/Agony

    by Ellie
    Replies
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    There is anecdotal evidence that prolonged stress...

    There is anecdotal evidence that prolonged stress can speed up progression of one's ALS/MND Hayls.

    If a person is stressed, they are more likely to have poor quality sleep and not eat well, both...
  15. Thread: Pain/Agony

    by Ellie
    Replies
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    8,422

    Dear Hayls, (I know I'm not MND Connect but...

    Dear Hayls,

    (I know I'm not MND Connect but it's Sunday so I'll reply today)

    Please remember just how much you’ve been through in the last 18 months - your beloved dad died; you were...
  16. Thread: riluzole

    by Ellie
    Replies
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    I'm sorry you're feeling so awful, Hettie. No,...

    I'm sorry you're feeling so awful, Hettie.

    No, if all those side effects are down to taking Riluzole, then it is not worth taking, especially if it's impacting on your confidence and quality of...
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    Yes indeed, Andy. One would hope the EC experts...

    Yes indeed, Andy. One would hope the EC experts keep abreast of innovation, but I fear many offer traditional solutions only and don't necessarily think outside of the box :(
  18. Thread: Portable hoist

    by Ellie
    Replies
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    Hi Will, Do you mean you're thinking of...

    Hi Will,

    Do you mean you're thinking of renting a full-lift hoist or a sit-to-stand hoist for your holiday accommodation?

    Yes, they do work well as long as you've the right hoist and sling...
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    Welcome Lynne, John & Natasha. Wow Lynne, you...

    Welcome Lynne, John & Natasha.

    Wow Lynne, you must be one strong lady. I am sorry about John's diagnosis and for all his previous trauma, which must have been even worse as it was abroad.

    Have...
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    Oil is taken sublingually for better absorption ...

    Oil is taken sublingually for better absorption - not pleasant tasting but short lived - it's way too expensive for rubbing into the skin :)

    Cream/gel, being applied only to affected area,...
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    From https://mov.acapela-group.com/learn-more/ ...

    From https://mov.acapela-group.com/learn-more/

    Take a look through the website Lynne and Good Luck!!


    "Free creation
    Please note that, at an initial stage, the service is free until you...
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    Yes, it is expensive to buy the iOS licence,...

    Yes, it is expensive to buy the iOS licence, Lynne (Windows or Android are more flexible) but the MNDA may be able to get a deal for you.

    Worth asking, they can only say No...
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    Glad you're happy with your voice banking, Doug x

    Glad you're happy with your voice banking, Doug x
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    Sorry to hear you are disappointed with Model...

    Sorry to hear you are disappointed with Model Talker, Lynne, it must be especially frustrating as it took so much effort and energy…



    Even if the MNDA paid for Model Talker, it’s worth...
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    The DIY solution of a cotton pad and Vaseline...

    The DIY solution of a cotton pad and Vaseline sounds good Lesley, if your mam's skin tolerates it and it doesn't cause air leaks. It's best not to let the Vaseline touch the mask rubber or it'll...
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