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  1. Replies
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    In my area, a carer is provided by social...

    In my area, a carer is provided by social services means tested, but capped at 50pw - a PA is somebody you employ yourself to perform caring duties. For a PA the Council will allow you pay your...
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    Thanks Kiran 1 - reassuring. Mel

    Thanks Kiran 1 - reassuring. Mel
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    Hi Rory - I will take all your very good advice...

    Hi Rory - I will take all your very good advice on board. Er, tho all the nurses will be Welsh! Many thanks. Just one teeney concern - it is the hospital that the MP raised in Parliament before Xmaa...
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    PEG Approaches

    I am off to hospital next week for the PEG. Any positive tips in helping hospital staff undersand the particular requirements of MND patients? No horror stories please!
    [talking of horror stories,...
  5. Thread: RIP Joybells

    by mellonius
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    Just so sad = thinking of you joybells RIP Mel

    Just so sad = thinking of you joybells RIP Mel
  6. So many of us are being realistic about Christmas...

    So many of us are being realistic about Christmas - so this is time to be really positive and make it as good as poss for everyone's sake. Remember too that some things are not peculiar to MND eg...
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    Men only - urine bottle - a solution!

    The thread I started on this topic on 1st Dec - and why - produced 18 or so helpful suggestions, so some may be interested in and helped by a solution found for me by a nurse recommended by my...
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    Roy - no luck with a wet room - they've just...

    Roy - no luck with a wet room - they've just widened the door to make loo/whb more accessible. Got to go Day Centre for bathing etc. M
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    .A week in the life....

    For interest, comment etc.....
    FRIDAY
    11..Visit from advisor [plus carer and student] on paying for care. 3 options - Council, employ PA, employ agency. All options capped at 50pw.
    12 Visit from...
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    Chrissie- a post script. If Riluzole works at...

    Chrissie- a post script.

    If Riluzole works at all, it doesn't bolt on 2/3 months or so at the end, - if it did, Bob and Joybells might have a point. Instead, it works like a piece of elastic....
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    This thread made me add up what I've had since...

    This thread made me add up what I've had since diagnosed in March. I feel - almost - guilty. Almost - but not quite!

    New rear door and ramp
    Profile bed and bed levers
    Chair heighteners
    Rising...
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    Yes Joybells - I must have same bed and bed lever...

    Yes Joybells - I must have same bed and bed lever [on one side]. Have to struggle in and out in night - [can't use the urine bottl!] and have rail on other side to reduce risk of falling out when !...
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    Great responses - some great shakes Thanks M

    Great responses - some great shakes Thanks M
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    Had mine 2 weeks supplied by NHS via OT. OK but...

    Had mine 2 weeks supplied by NHS via OT. OK but very difficult after 40 years in a double bed - so narrow, but otherwise no complaints..Using silk filled duvet warm but light for turning. Had...
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    There are lots and lots of previous threads on...

    There are lots and lots of previous threads on this subject and as many views. My friendly pharmacist told me the cost of a daily dose - wow. I told my consultant, he didn't know before, and wished I...
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    Roy - no valleys accent boyo, tidy like innit -...

    Roy - no valleys accent boyo, tidy like innit - just proper job cor lummie devonshire one, m'dear. M
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    Great suggestion jeannie - thanks. I see on the...

    Great suggestion jeannie - thanks. I see on the web one has to be measured for this!!!!!!!!!!!!!!!!!!!!!!! mel.
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    Life with MND - Welsh Assembly

    Today, was one of three MND sufferers who gave a presentation to members of the Welsh Assembly government in Cardiff - to promote the MNDA Charter and raise awareness with those who provide the NHS...
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    Men only - urine bottle

    What a sad and stupid question, but HOW do I use a standard urine bottle in bed? I tried last night, with disastrous results! As I lie on my back [I can't sit up] and place the bottle in front of me...
  20. Thread: Weekends

    by mellonius
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    Thanks Pete - just a bit noisy for someone who...

    Thanks Pete - just a bit noisy for someone who can scarcely speak! Mell
  21. Thread: Weekends

    by mellonius
    Replies
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    13,043

    I,too,am at the point when a weekend is much the...

    I,too,am at the point when a weekend is much the same as as weekday - so if there is a difference - cherish it! But this weekend WAS different. I have been trapped in the house for 6 weeks as the...
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    [from a man] Have you tried a Travel John? [see...

    [from a man]
    Have you tried a Travel John? [see OT catalogues]. These are unisex, and are supposed to be manageable by both sexes [and children eg sat in the back of the car] from the same position!...
  23. Thread: Mr.kiran1

    by mellonius
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    I'm a March 2012 diagnosis too! Take each day as...

    I'm a March 2012 diagnosis too! Take each day as it comes. Remember every single patient progresses in a different way and timescale, so read forum threads when others describe their current...
  24. Thread: Grants

    by mellonius
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    You may need to be very brave about this.....I...

    You may need to be very brave about this.....I was quoted 12.5k for a downstairs wet room using part of garage - no grant - 'your pension is too high'. With Consultant. we did a 'cost benefit...
  25. Thread: Blue Badge

    by mellonius
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    On holiday in France last year, saw a big ...

    On holiday in France last year, saw a big market.had leaflets available for disabled customers to stick on the windscreens of cars parked in disabled bays saying 'TAKE MY SPACE - TAKE MY...
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