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Thread: Checklist for losing the use of your arms

  1. #11
    Forum Member nunhead_man's Avatar
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    Jul 2017
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    Hi Sarah, and thank you all

    Quote Originally Posted by slp View Post
    I have been trying to remember the things that helped me as various parts of the body ceased to function as they should .......I am not sure that this is what you really wanted but I prefer to concentrate on what I can do not what I can no longer do so I hope it is useful
    This is indeed the kind of thing I wanted and I realise that as Ellie says it makes a sombre list - but then I sometimes do feel really sombre.

    I hear what you say Ellie about those space requirements, but probably misquoting somebody on 1 of the Facebook groups – MND Warriors – occupational therapists are quoting the Rolls-Royce standard to which we should aspire although I agree it seems that developing wheelchair standards, especially those that turn in their own space, and using a smaller wheelchair inside and outside. make make for less of a space requirement.

    Here are some of the links from that group, including some I posted;

    https://www.sunrisemedical.co.uk/pow...Ls34F0ROPT9OJU

    https://blogs.3ds.com/perspectives/i...g_QesdzYKmoUc4

    https://www.sunrisemedical.co.uk/pow...-salsa-m2-mini


    And somebody mentioned keys and that sort of thing - I was thinking today as I lose proper use of my other hand about how I would be able to get myself out of the house by turning keys and wondered if some sort of adapter was available to allow me to use these hands that have become paddles.

    Obviously, as we are now thinking about moving we do not really want to rig the place up with voice-activated door openers or whatever if are we going to be moving in the spring of 2020.

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  2. #12
    Forum Member
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    Jun 2018
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    South Coast
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    You can look up key turners, they work well. I found clothes/pants etc that were a bit big for me gave me a bit longer before carers,as did thumb splints, helps floppy thumbs!
    I found playing zelda helped keep my left thumb going a bit longer.
    I think we lose in different ways, eg my shoulders are gone but i still have a little movement in my left fingers and thumb where it started 2 years ago, so your ot is probably the best source of ideas for kit
    On a more sombre note, while i was panicking about what i should draw or make while my hands failed , i assumed my voice would be ok to rerecord my songs. It wasn't.
    So if you dream of doing something that depends on your body , consider prioritisingCB them by importance rather than body area xx
    Lots of love, Lisa

  3. #13
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    Checklist for losing the use of your arms

    Alrightty It seems when Rome was burning, there was a citizen that posted likes in Youtube for Neros fiddle music. How dare they ignore that music I say?

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