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Thread: well at least i know

  1. #1
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    well at least i know

    been diagnosed with MND (anterior horns cell disease) 2 days ago.
    been 18 months of tests and scans. well now I know. I have not been able to walk at all for around 6 months. got all the bits like stairlifts etc and scooters. its now bucket list time. I have spoken to my illness and gave it a very stark warning. YOU WILL NOT TAKE ME AS EASY AS YOU THINK.

  2. #2
    Forum Member Terry's Avatar
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    Hi Will and welcome to the forum;

    Sorry to hear of your so recent diagnoses. It's not good to know you have Mnd but at-least you have a label and now can move forward.

    Can you bear weight on your legs reliably?

    Please fell free to ask any things or share things with us, good or bad.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
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    hi Terry. no I can't use my legs at all. my poor wife has to dress me. my legs are like two heavy logs.

  4. #4
    Forum Member Terry's Avatar
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    Hi Will;

    Sorry to hear that. My poor wife has to do a lot for me as well especially over the last few months.

    I have a series of distant Mnd related problems, all of which have put on a lot more stress and work for her.

    Love Terry

  5. #5
    Forum Member Ellie's Avatar
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    Hi Will & welcome to our motley crew!

    Is it just your legs affected for now? I use the term "just" not in a derogatory way!!!

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  6. #6
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    my legs are by far the worst part. my arms are weakening, my throat is tender and gruff. my torso spasms and creases me. my fingers fold at will and the pain runs right up the arms. apart from that i'm buzzing

  7. #7
    Forum Member Ellie's Avatar
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    Are you on Baclofen or other antispasmodic meds? You don't need to endure pain!!
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  8. #8
    Forum Member Barry52's Avatar
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    Hi Will and welcome to the forum.

    I hope you have a good team around you as life with MND can be a huge challenge to our loved ones. You mentioned your throat and I suggest you might want to consider voice banking as a number of our friends have done.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  9. #9
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    hi Barry. I don't know what voice banking is.

  10. #10
    Forum Member Terry's Avatar
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    Hi Will;

    Sometimes your voice is affected by Mnd and you have to use a machine to talk with. You can get your voice synthesized and use that on a talking machine. It can reassemble your own voice instead of having a off the shelf one.

    Love Terry

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