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Thread: Hello to everyone! 😓

  1. #1
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    Apr 2020
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    Hello to everyone! 😓

    This is my first post, i am 49, live in Beckenham, diagnosed 10th july 2019 with limb onset at Kings College after having twitching in my right bicep and tricep back at the beginning of 2016.
    I am devastated, firstly because i was a firefighter in London most of my adult life, which i had to give up on 10th July 2018! A year to the day before my diagnosis! Secondly because i genuinely feel well and am still struggling to accept this.
    I am heartbroken as i have my amazing wife whos life has not only been turned upside down in every way but, waits hand on foot for me to do everything she possibly can to make my life easier. Also i have my 4 perfect boys, 14,13,11 and 3. To tell them that their dad has this and what will almost certainly happen is the hardest thing i have ever done. Harder than anything i dealt with in the brigade and, even harder than dealing with my daughter tragically dying in 2003. 😭😭.
    Seeing my dad, my mum, my sisters and amazing friends suffering is so so painful for me. It would be easier mentally if i had no one around who cared is how i feel.
    What makes this so surreal is that i was a powerlifter, big, strong, competing for great britain all round the world winning gold medals lifting massive weights, looking like i were cut from a single piece of granite, and now, my body, and strength are slowly, silently and painlessly without any commotion, is melting away!
    Well heyho, heres to fighting this demonic death sentence i/we have been cursed with!!!!! I won't lie down and take this without a real fight. A great phrase i was told many years ago which has never been more prevalent is:
    ITS NOT THE SIZE OF THE MAN IN THE FIGHT, BUT,
    THE SIZE OF THE FIGHT IN THE MAN.
    So, hello everyone and look forward to posting some informative, positive helpful and useful posts........💪👍

  2. #2
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    Jun 2018
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    i hear your pain. july 18 for me.

  3. #3
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Hi DB, welcome to our forums. Sorry that you’ve had to join us on this dreadful journey. It is hard on our partners/caters and other close family. Sounds like you had a very full physical life before MND, a big loss to come to terms with but you demonstrate a fighting spirit which is the best that any of us can do. Take care, and chat again soon, Lynne
    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.

  4. #4
    Forum Member Ellie's Avatar
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    Welcome to a different Band of Brothers, Donkey Boy, but sorry you've had to join us. We have a few firefighters on board.

    I am desperately sorry also about you losing a child - there must be no greater pain... I can understand why you're protective of your boys but, honestly, children are more resilient than we think they are and they adapt to changes often better than us adults! My own children were 3 & 5 when I was diagnosed and wanted to help me and be involved in my care from the get go - being involved took the mystery out of the situation for them, normalised my needs which in turn made everything less frightening. IDK what stage you're at, but if you get any equipment, be it a wheelchair, hoist, machine etc, let them give it a go (within reason, obvs!)

    Keep up the positive mentality, it counts, believe me.

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

  5. #5
    Forum Member Shaun's Avatar
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    Hello DB
    Sorry you've had to join us, but hopefully knowing that others have gone through the same rollercoaster of thoughts and worries, you know you are not alone. Acceptance is hard but try to keep positive ,
    Shaun

  6. #6
    Forum Member nunhead_man's Avatar
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    Good afternoon Donkeyboy

    Welcome to this forum that nobody really likes to be in but has to be defined vital support.

    I too am arm onset as you seem to be and it may be some slight comfort if you are developing quite slowly as you seem to be?

    This is the right place to ask for all sorts of support both technical and emotional
    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

    "Things turn out the best for people who make the best of the way things turn out"

  7. #7
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    Hi Donkeyboy,
    I understand your position all too well, having been diagnosed at the beginning of this year.
    I too was/am fit inside, and was a successful competitive judo player, Army physical training instructor for 18 of 22 years, a keen DIY enthusiast and I loved my motorcycles (I had three). Giving up my motorcycling was nothing to having to tell my family about my condition and seeing how it hurt them. I am trying to deal with it all now, and look back at what I have done over the years.
    I have always tried to make the most of what has been dealt, I just hope I can maintain that ethos.

  8. #8
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    Hey beemer, how similar we sound! Riddem motorbikes on and orf road all my life! Hntil i got smashed off at the pelican crossing at the top of trinity road near wandaworth bridge 13th september 2018. Cant ride anymore as grip drastically went after that! Been active all my life which makes whats happening all the more difficult to take!

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