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    Don't know if you'd be into these Neater Eater...

    Don't know if you'd be into these Neater Eater gadgets Andy, nor do I know if you'd need a 2nd mortgage to buy one...

    https://neater.co.uk/suitability/

    Feeding tube is an option but hard to get...
  2. Thread: Mum

    by Ellie
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    Hi Julie. I's so sorry to hear of your mum's...

    Hi Julie.

    I's so sorry to hear of your mum's far-too-brief life with MND and I cannot imagine how hard it was for you all that your beloved mum was infected with Covid-19 in a supposed place of...
  3. Thread: Symptoms

    by Ellie
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    Hi Margaret. (sorry for butting in on this...

    Hi Margaret.
    (sorry for butting in on this thread!)

    I think because anxiety is such a prevailing factor in this case that you’re doing the best thing for your son (and for you) in going for a...
  4. Thread: Hoists

    by Ellie
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    I totally get his reluctance for the hoist Jane. ...

    I totally get his reluctance for the hoist Jane. It was the worst bit of equipment for me to accept too. To me, there's something about a hoist that screams DISABLED!!, even more than my wheelchair...
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    I have a community-supplied "hospital" bed, which...

    I have a community-supplied "hospital" bed, which doesn't look much like a bed found in an actual hospital but equally, not as homely looking as a profiling bed available to buy. Hospital bed and...
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    Hi Paul and a warm welcome to the Forum. Did...

    Hi Paul and a warm welcome to the Forum.

    Did your Neurologist ever give you an MND subset - e.g. ALS, PLS, PBP, IBP (amyotrophic lateral sclerosis, primary lateral sclerosis, pseudobulbar...
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    Thanks for those, guys! I'd forgotten about...

    Thanks for those, guys!

    I'd forgotten about The Americans - that's now on the list, thanks Matthew.

    Tess, how brave are you to suggest Mamma Mia to your partner ;) The first one was bad...
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    Sorry to hear this, you must have been exhausted...

    Sorry to hear this, you must have been exhausted both physically & mentally.

    I wonder if a hospital/profiling bed would help you - they're almost universally regarded as hateful things until we...
  9. Thread: Please help.

    by Ellie
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    I'm so sorry Margaret, it's impossible for me to...

    I'm so sorry Margaret, it's impossible for me to say.

    If this is going to cause him a lot of stress and anxiety and, by default stress you, it may be worth seeing if you can afford a private...
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    Andy, you have asked this question over and over...

    Andy, you have asked this question over and over and have been answered, not only on this Forum either.

    If you won't believe the verdicts of 6 Neurologists, 6 highly trained professionals, you...
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    Ooh, thanks Tess. I'd love some suggestions...

    Ooh, thanks Tess. I'd love some suggestions too!!

    We are almost finished watching Ozark on Netflix and are really enjoying it. I'd describe it as the Breaking Bad equivalent of the money...
  12. Thread: Please help.

    by Ellie
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    Hmm, that's a hard one Margaret and you're right...

    Hmm, that's a hard one Margaret and you're right to be cautious.

    Without knowing the cause of his weakness, it's impossible to know if exercising would only aggravate it and do more harm than...
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    Hi Jody, I know what you mean about your Dad...

    Hi Jody,

    I know what you mean about your Dad not wanting to make a fuss - my parents are the same!! You may find yourself having to be that squeaky wheel more & more :( Your parents parents...
  14. Thread: Please help.

    by Ellie
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    687

    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...
  16. Thread: Constipation

    by Ellie
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    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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    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...
  19. Thread: Hot hot hot

    by Ellie
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    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...
  24. Thread: Telling Family

    by Ellie
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    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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