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Thread: Just been diagnosed

  1. #1
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    Just been diagnosed

    Hi Everyone,
    After nearly 4 years of tests and degeneration to the point of paralysis from the neck down, I have been advised of MND.
    I wasn’t shocked as and it was a relief to have a formal diagnosis after “ kicking the can down the road”. Being advised of what to expect in the future isn’t the best news but I am where I am. I have a fantastic wife who has cared for me in the last 2 years. This situation affects her and our family just as much as me.
    I’m advised that we will be introduced to a MND nurse who can help.
    I will keep up to date on the forum and hope to link up with people and chat about our predicament.
    Tony

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

    I guess it's probably nice to be diagnosed after 4 years but do wonder why it took such a long time and you to be paralyzed from neck downwards before it.

    Yes Mnd affects everyone, totally.

    I guess you must have a team of people helping and advising you. PLease feel free to ask any questions or share things with us.

    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 and thanks.
    Yeh it took time but they were following a Muscular dystrophy path which turned out to be a dead end

  4. #4
    Forum Member Kayleigh's Avatar
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    Hi Tony and welcome to the forum,

    Sorry to hear of your diagnosis. You will find a lot of support from the friendly folk here.

    There are some wonderful people with great personalities here (including our very own kind and caring 'Top Cat'!, who I see has already welcomed you). Now that you have made your first posts, I hope you will feel welcome to join in on this forum as much as you like.

    It is good to hear that you have got a wonderful wife, and there is support for her here as well, if she would like it. Many carers post on this forum and they are all wonderfully supportive and kind.

    It is great that an MND nurse is going to see you soon. Hopefully, she/he will be able to let you know about any other medical professionals who are available to support you.

    If you haven't done so already, you or your wife may wish to get in touch with your Regional Care Development Adviser (RCDA) - please find below a link to further info and their contact details. The RCDAs are very knowledgeable and caring, and they are great people to contact for friendly support and advice.

    http://https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

    Love and best wishes to you and your wife,
    Kayleigh x
    Last edited by Kayleigh; 20th January 2019 at 16:57.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  5. #5
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    Hi Kayleigh
    Thanks for kind words and info
    Cheers Tony

  6. #6
    Forum Member Kayleigh's Avatar
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    You are very welcome Tony.

    I hope you and your wife have a lovely evening. I'm watching Dancing on Ice on TV - it's not quite my hubby's 'cup of tea'! - but I find it quite enjoyable to watch, as it's a nice bit of cheerful light-entertainment on a Sunday evening

    Cheers,
    Kayleigh
    Last edited by Kayleigh; 20th January 2019 at 21:38.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  7. #7
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    Welcome to the forum

  8. #8
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    Dancing on Ice would be additional torture��

  9. #9
    Forum Member Kayleigh's Avatar
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    Are you more of a 'Strictly Come Dancing' fan, Jonboy?
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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