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Thread: Hello I知 Douglas

  1. #1
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    Hello I知 Douglas

    I知 58 and this year have had a few trips/falls; lost a lot of weight and saw my speech dwindle to almost unintelligible.

    The GP thought either a stroke or MND so signed me off work ( I have been a software engineer) from the 18th September for six weeks

    I was given the clinical diagnosis of MND at Salford Royal last week and am waiting for the MRI scan results.

    I really feel sorry for my wife In all this xxx

  2. #2
    Forum Member AndyB's Avatar
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    Hi Douglas,
    Welcome to the place you'd rather not be. I was diagnosed in 2016 at the age of 58, I'm a software developer working increasingly from home prior to my earlier than planned retirement in January.

    I completely understand the feelings you have for your wife with this. After a few weeks of emotional roller coaster I came to terms with the situation but my wife seems to really struggle.

    Good luck with your fight against MND, there are some really nice people on this forum who will give you useful advice.

    Stay positive and keep smiling (that's what I do).

    Andy

  3. #3
    Forum Member Ellie's Avatar
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    Hi Douglas and welcome.

    Sorry about your diagnosis. As Andy said, it's an emotional roller coaster BUT things do settle down and you'll have laughs again!!

    I'm sure you've found Apps for text-to-speech and, if your hands aren't up to typing, there's eye gaze tech which gives full PC access (I'd be lost without it)

    Hope you've good support.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
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    hi Douglas welcome . my Husband Mick was 58 when he was diagnosed on 17/7. ( he turned 59 2/10)

  5. #5
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    Hi Douglas, a warm welcome. I was diagnosed in September and I'm starting to have big chunks of the day when I almost forget about MND, but things are up and down for a while. I hope you find the adaptations that suit your needs and make life easier for you xx i feel for your wife and send love x My mum can barely cope with it, bless her (I'm 45)
    Lisa x

  6. #6
    Forum Member Barry52's Avatar
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    Hello and welcome Douglas,

    You and your family will take time to adapt and accept life with MND but unity and love will help everyone to cope. Technology today is a huge help and of course you have a head start through your profession.

    Best wishes,
    Barry
    I知 going to do this even if it kills me!

  7. #7
    Forum Member Lynne K's Avatar
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    Hi Douglas, sorry that you have had to join us on this scary journey. I too attend Salford Royal under the care of Miss Amina Chouch. I hope that your local services have been in touch about lending you walking aids and other helpful gadgets.

    Seeing as you are losing your voice its probably a good idea to bank whatever is left or get a family member who sounds a lot like your healthy voice to do so. I and others on this forum have built our voices with Modeltalker. You or somebody records 1600 sentences and with some tweaks that I won't bore you with they create a synthetic voice as close to your natural voice as is possible. You can then use that voice in various speaking aids. I downloaded mine to my Ipad to the Predictable app that I previously downloaded.

    We are in Bury but most likely moving to an adapted bungalow in Radcliffe before Christmas. Take care and stay safe. Lynne
    Last edited by Lynne K; 22nd October 2018 at 18:27.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  8. #8
    And I am Christine and I'm the wife

    This has been a shock because Douglas has always been the healthiest person I know, bar none. I wouldn't feel sorry for me though - Doug has already supported me through cancer and heart problems so I think it's my turn - but it IS hard to come to terms with the fact that MND has no happy ending

  9. #9
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    Welcome Douglas, and Christine

    You will both find a lot of support, knowledge and great advice from the members of this forum.

    Wishing you both the very best in the days ahead.

    CCxox
    .

  10. #10
    Forum Member Ellie's Avatar
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    Hi Christine & welcome.

    Sorry to hear of your own health problems - you sound like a strong woman.

    No, you're right, there's no happy ending to MND, but there are happy times to be had in the meantime ! Every single person dies at some stage - having a terminal illness just focuses the mind.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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