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  1. Thread: Hot hot hot

    by Ellie
    Replies
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    402

    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
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    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...
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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...
  6. Thread: Telling Family

    by Ellie
    Replies
    13
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    951

    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.
    ...
  9. Thread: Sad news

    by Ellie
    Replies
    5
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    247

    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....
  10. Thread: Do I?

    by Ellie
    Replies
    8
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    618

    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.
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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 :))
  15. Thread: Neck pain

    by Ellie
    Replies
    4
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    281

    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.
  16. Thread: Introduction

    by Ellie
    Replies
    13
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    992

    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...
  17. Thread: Neck pain

    by Ellie
    Replies
    4
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    281

    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...
  19. Thread: Telling Family

    by Ellie
    Replies
    13
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    951

    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...
  20. Thread: Hot hot hot

    by Ellie
    Replies
    6
    Views
    402

    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...
  21. Thread: Introduction

    by Ellie
    Replies
    13
    Views
    992

    Great that your first night using BiPAP / NIV /...

    Great that your first night using BiPAP / NIV / ventilator went so well for you John and that you got good benefit from it.

    If there are any Covid-19 patients on your ward, I hope they're well...
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    I understand Dave's concerns about swallowing the...

    I understand Dave's concerns about swallowing the endoscope - I had one a few months after my initial PEG procedure and opted for no sedation, so gagged for a few seconds, unlike my actual...
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    A warm welcome to the Forum, Gill and sorry about...

    A warm welcome to the Forum, Gill and sorry about your husband's diagnoses.

    Semantic Dementia is a variant of FTD (FrontoTemporal Dementia) which can be associated with, or go hand-in-hand with...
  24. Thread: Menopause

    by Ellie
    Replies
    5
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    328

    I have it all ahead of me. Am dreading hot...

    I have it all ahead of me. Am dreading hot flushes - I'll have to grin and bear it as I've no useful hand or arm function so if HRT patches stop them, count me in!!
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    Welcome to the Forum, Victor - sorry to read of...

    Welcome to the Forum, Victor - sorry to read of your father's diagnosis.

    Your compassion and love for him comes through clearly, he's fortunate to have you.

    Love Ellie.
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