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Thread: Confirmed diagnosis

  1. #1
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    Confirmed diagnosis

    Hello to everyone. What a wonderful forum full of friendship, kindness,love and packed with useful information. My name is Trevor (56) and I received a confirmed diagnosis two days ago after 3 EMG and lung function tests. Presently my issues are all around the bulbar area so over the last 18 months my speech has been deteriorating to the extent that my wife Wendy sometimes has difficulty understanding me. I was not particularly shocked when the consultant said "it is MND" knowing that the progressing symptoms strongly pointed to MND but Wendy took the news badly as she was ever hopeful it would be something else. Hopefully with time, family and friends (and the forum) we can make the most of our time together and continue to enjoy our lives.
    One day at a time 😁
    Thank you

  2. #2
    Welcome Trevor.

    This forum is.… exactly as you say.

    I'd say you're starting with exactly the right attitude - one day at a time.

    And I don't know who said it, but I try to remember that "Today is the tomorrow we feared yesterday"

    Thank you for joining us.

    Doug

  3. #3
    Forum Member Ellie's Avatar
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    Hi Trevor & sorry you've to join us.

    Difficult as it is for us to hear our diagnosis, it is so hard on our nearest and dearest too especially as all the focus is on us - my heart goes out to Wendy.

    Your diagnosis is very new and raw, so I don't want to bamboozle you, but 3 things should be on your radar even now:

    You mentioned your speech - if you have a Speech Therapist, they will give advice on speech apps, voice banking and safe ways to eat & drink.
    Start thinking about feeding tube and if you decide on having one, it's really advisable to get one when in best possible health.
    Likewise with non-invasive breathing assistance, early intervention is best (you also mentioned breathing tests, so you've baseline measurements)

    Keep healthy too - if you've not had the flu shot & pneumonia vaccine, you should do so.

    Lastly, a positive outlook and a good sense of humour go a long way in dealing with our condition - as well as a cathartic good old cry from time to time !!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #4
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    Hi Trevor, I am so sorry for your diagnosis,

    Welcome to the forum.. It's the right place for advice and emotional support from people who really understand. The diagnosis is such a shock, even when MND is strongly suspected and I really feel for your wife. It hit my husband very hard initially and me a few weeks later...I guess we are all different but you do adapt and laugh again ... sometimes at the strangest things !

    You seem to have a really positive attitude and taking one day at a time is the best advice. No one knows what's round the corner. Be kind to yourself and each other, in these early days and don't try to stay strong all the time.

    Love Debbie

  5. #5
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    welcome Trevor. My Husband Mick was diagnosed 17/7 he was 58 , since turned 59. It is devastating. luckily i work in school so was off for summer break. you will find lots of support on here. Mick uses a bipap at night and if he has short mid day nap

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

    As you suggest our partners often find it difficult to come to terms with a diagnosis of MND, especially if they have some knowledge of the symptoms and disease progression. Of course we are all different in this and you appear to have a positive attitude which will help you cope.

    Please ask whatever you want and I’m sure someone here will have the answer.

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

  7. #7
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    Thank you too you all for the welcome and the advice. It is appreciated.

  8. #8
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    Hi Trevor, I completely understand how she feels I’m the Mum of Jen diagnosed last Sept at 33 yrs old having just had a baby, I still haven’t come to terms with this and am overwhelmed regularly. Time I dare say is a great healer but still waiting, so sorry you find yourself here and I wish you and your wife well.

  9. #9
    Forum Member Boiler68's Avatar
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    Welcome Trevor and Wendy..sorry you find yourself here but you will get lots of advice and tips on coping. The answers here are often much clearer than at clinic and I am sure you've heard that everyone's journey is different. I hope you can both find help here. Be kind to each other xx

    Boiler x

  10. #10
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    Thank you very much for you kind words

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