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  1. Thread: Please help.

    by Ellie
    Replies
    2
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    73

    Oh Margaret, as a mum myself, my heart goes out...

    Oh Margaret, as a mum myself, my heart goes out to you. Your son's anxieties must be through the roof at this strange time, even without thinking he has and MND - I'm sorry you're both going...
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    In ALS/MND, muscles don't feel any different,...

    In ALS/MND, muscles don't feel any different, they simply fail to function - if it starts in the arm, the fine motor skills would be first to fail.

    You're not describing MND, keep working...
  3. Thread: Constipation

    by Ellie
    Replies
    2
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    52

    Ahh, Constipation - one of my favourite topics ...

    Ahh, Constipation - one of my favourite topics :)

    Yes as you say, decreased mobility has a negative effect on the bowels, as does our inability to push or even to sit on the loo properly due to...
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    165

    Oh Jody, that's really unacceptable for the OT to...

    Oh Jody, that's really unacceptable for the OT to leave your poor Dad without a good neck support :( There are so many different types available... (It makes me mad to hear this as, without my...
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    Sorry you're anxious about this but the good news...

    Sorry you're anxious about this but the good news for you is that pins & needles and tingling are NOT presenting symptoms of MND - IDK what sites you Googled that suggested these are symptoms of...
  6. Thread: Hot hot hot

    by Ellie
    Replies
    6
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    460

    Yes, in general the cold makes our muscles have a...

    Yes, in general the cold makes our muscles have a higher tone, which gives them some strength from their rigidity - a bit of a Brucie Bonus from having unbendable legs :)
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    Don't worry Matthew - it's only the likes of...

    Don't worry Matthew - it's only the likes of mobility aids that are VAT exempt :D
  8. Replies
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    165

    Hi Jody, sorry about your Dad's diagnosis but a...

    Hi Jody, sorry about your Dad's diagnosis but a warm welcome to the Forum.

    First port of call for your Dad's needs is his OT, who can asses him and provide equipment to make his daily life...
  9. Replies
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    Ah that sounds great Hayls. I'd cross my legs...

    Ah that sounds great Hayls.

    I'd cross my legs for you if I could, or my fingers, ditto - oh you gotta laugh :p:D:D no point crying, eh!
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    Yikes, if the urinary catheter is that bad Hayls,...

    Yikes, if the urinary catheter is that bad Hayls, then it's really not worth it and the suprapubic is the way to go for sure - did you get a date for the op?

    Your lung function is obviously very...
  11. Thread: Telling Family

    by Ellie
    Replies
    14
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    1,003

    Hi Spooky and a warm welcome to the Forum. ...

    Hi Spooky and a warm welcome to the Forum.

    You're right to say that we all deal with things in our own way - there is no right or wrong way, just whatever suits your circumstances. Great to...
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    Hi Nomes and welcome to the Forum. Sorry to...

    Hi Nomes and welcome to the Forum.

    Sorry to hear of your late mum's diagnoses - admirable of you to offer to share your knowledge and experience, thank you.

    Love Ellie.
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    Hi Barry. What about a mini pedal exercise...

    Hi Barry.

    What about a mini pedal exercise 'bike'? Many are also suitable for arms (on a table top?) which, with some level of resistance, should keep your joints mobile and muscles pumping.
    ...
  14. Thread: Sad news

    by Ellie
    Replies
    5
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    270

    Oh Sue, I'm so sorry to hear your sad news -...

    Oh Sue, I'm so sorry to hear your sad news - heartfelt condolences to you.

    Steve was a warrior indeed and you were instrumental in enabling that.

    Wishing you love and strength.

    RIP Steve....
  15. Thread: Do I?

    by Ellie
    Replies
    8
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    629

    So true Madge - these mobility aids give us...

    So true Madge - these mobility aids give us more freedom & independence.

    Enjoy the wind in your hair :)

    Love Ellie.
  16. Replies
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    Ask about clinical trials at your next Clinic...

    Ask about clinical trials at your next Clinic appt.

    This is the list of trials in the UK which are either actively recruiting or will in the near future: (Although it's a US site, it registers...
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    It does sound like your legs are complaining...

    It does sound like your legs are complaining about their hard weekend Wayne and need time to recover (or maybe they're punishing you for playing so "miserably" ;):D) Exercise is good but the way to...
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    Yeah, looks good Matthew, seems top of the range...

    Yeah, looks good Matthew, seems top of the range and good value with that extra 20% voucher off - makes up for having to pay VAT on Amazon. (You can buy seats VAT-exempt on 'mobility' websites but...
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    Another really useful thing to consider buying is...

    Another really useful thing to consider buying is a wash & dry loo (although obviously a lot more expensive than a cup :))
  20. Thread: Neck pain

    by Ellie
    Replies
    4
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    287

    Oh that's good to hear, thanks. Hopefully...

    Oh that's good to hear, thanks.

    Hopefully he'll be in less & less pain over the weekend.
  21. Thread: Introduction

    by Ellie
    Replies
    13
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    1,021

    That's disappointing John, I wouldn't last 2hrs...

    That's disappointing John, I wouldn't last 2hrs without a humidifier!! It can take a few different settings before landing on the ideal one.

    Is it working as it should - can you check if the...
  22. Thread: Neck pain

    by Ellie
    Replies
    4
    Views
    287

    It’s hard to know what caused Dave’s neck pain,...

    It’s hard to know what caused Dave’s neck pain, Gill, whether it’s down to sleeping awkwardly, if his neck muscle is in spasm or it may be an injury to name but a few culprits.

    Neck pain is quite...
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    Sorry Andy, it seems nobody (so far) has...

    Sorry Andy, it seems nobody (so far) has experience with the products.

    I guess it depends what you hope to get from them as to if it's worth spending money on them - nothing stopping you trying...
  24. Thread: Telling Family

    by Ellie
    Replies
    14
    Views
    1,003

    Tess, I'm so sorry you've been put in such an...

    Tess, I'm so sorry you've been put in such an awful situation - it's just not fair on so many levels.

    I've no words of wisdom to add to what's been said above but I wanted to give you support...
  25. Thread: Hot hot hot

    by Ellie
    Replies
    6
    Views
    460

    Hi Cocoa and a warm welcome to the Forum. Yep!...

    Hi Cocoa and a warm welcome to the Forum.

    Yep! The heat absoluely wipes me out and makes me weaker - just drains me completely, making everything seem more difficult :( I managed about...
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