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Thread: Tough few weeks

  1. #11
    Forum Member Chris's Avatar
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    my OT was only interested in raising my couch or sticking hand rails everywhere, as she said "we do want to think too far ahead"
    YNWA............Trying to stay positive..........

    Website http://chris-versus-mnd.weebly.com/

  2. #12
    Forum Member Ange M's Avatar
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    Dont leave it too late guys, Steve, had been measured for an upgraded manual one and they omitted to send the headrest and in between this arriving even though I pestered their lives out to get it sent out,by the time it arrived and they arrived back to setit all up it was decided that the chair was not suitable and we had to look again at what would work for him, meanwhile he was admiitted to hospital and he never got to use
    that one.

    Steve was reluctant to take anything, and really you need to grab everything with both hands as patrick says don't leave it too late get out and enjoy yourselves!
    Ange x

  3. #13
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    Hi Chris
    Sorry you've had a tough couple of weeks. Like you all of a sudden my body has deteriorated. My legs gave way causing me to fall into my frame and getting entangled in it, totally stuck. I ended up dialing 999 but the operator couldn't understand me so the police and ambulance arrived! No broken bones but now totally immobile. Within 24hrs of my o/t physio and Mnd nurse knowing, I was supplied a portable hoist, turntable and on the list for a powered wheelchair. They are very pro active, sounds like yours needs a kick up the ar*e!!

    When I originally got a manual wheelchair I hated it, but after a lot of tears realised to live life to the full, accept and move on. I regularly go to the pub, cinema and theatre.

    I have only my left arm/hand working now so I try not to think what happens when that goes. However I've asked for dual controls for the chair, planning for the future.

    I have tearful moments but on the whole try to keep smiling and find a positive for every negative.

    Kind regards

    Sally

  4. #14
    Forum Member Z3 Driver's Avatar
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    Chin up Chris, im the same , it seems everyday im noticably weaker. My good arm certainly in decline.
    Im about to start the process of selling all my mountain bike gear and the 3 bikes i have and its heartbraking as i loved the sport passionatly.
    But im going to spend the money on myself to try to bridge the pain. Not sure on what but i'll enjoy it.
    Have you seen the film ' indestructible ' . Ben Byer has amazing inner strength in the face of this awfull disease.
    Be positive mate.

  5. #15
    Forum Member Chris's Avatar
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    Cheers mate
    Not seen that, where can i get it from? is it available online?
    YNWA............Trying to stay positive..........

    Website http://chris-versus-mnd.weebly.com/

  6. #16
    Forum Member Z3 Driver's Avatar
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    http://forum.mndassociation.org/show...the-big-screen

    just email them and they'll send you one.

  7. #17
    Forum Member Chris's Avatar
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    Cheers Kevan, just emailed now.
    YNWA............Trying to stay positive..........

    Website http://chris-versus-mnd.weebly.com/

  8. #18
    Vane
    Guest
    Hi all,
    the wheelchair service in my borough in Kent is painfully painfully slow and although I am on their case, along with the motor neurone clinic, they inform that the waiting list is months even though I am a priority- I applied for an electric wheelchair in January and they have still not assessed me to sort it (have written to my MP to complain on MND patients behalf).. However,the association came up trumps and I have a powerchair on loan from them and, like Patrick, I love it so much so that if Ive been away without it I cant wait to get home to be reunited. Sad I know!! vanessa
    .
    Last edited by Vane; 25th April 2011 at 22:01.

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