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Thread: MND diagnosis and link to heavy training

  1. #11
    Forum Member ccinjersey's Avatar
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    It seems to coincidental to be just coincidental that very fit active people develop this illness. There has got to be some kind of link they just haven't discovered the mystery of it yet, as well as in the Military people.

    Why is there a higher rate of ALS with Military people ? it makes you think it must be something they were exposed to in their environment or was it all the physical training they go through ?

    It also makes you wonder if the 'why' to it is answered would it help bring about a cure quicker ?

    xox
    Love feels no burden, thinks nothing of trouble, attempts what is above its strength, pleads no excuse of impossibility; for it thinks all things lawful for itself, and all things possible.

  2. #12
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    Hi, this is very interesting. My husband always looked underweight, had an active job (postman) and played football. He has always had two boney bits on top of each shoulder and I have noticed more recently an enlarged backbone but I don't know which number it is? He also has red hair...
    I think we should organise our own questionnaire, very broad at first and then do further ones to pinpoint things. I think that research amongst ourselves would be good for comparing with others the things that bug us about this disease and I have plenty of time to organise data.
    On the other hand sometimes we don't want to look too deeply into this.
    I think It's different when researchers gather data because they are not the ones who are always affected. It is this forum of people in the front line that know what they really want to ask. I've got a list of about 50 things so far!
    Best wishes to you all.
    We are doing the best we can
    Fru

  3. #13
    Forum Member Ellie's Avatar
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    Quote Originally Posted by ccinjersey View Post
    It seems to [too] coincidental to be just coincidental that very fit active people develop this illness.

    Very unfit, very inactive people also get MND.

    People won't say "I'm a couch potato" but are quick to say "I ran 10Ks, but now I've MND". That's human nature. We don't think healthy people should get diseases, but we do.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  4. #14
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    Hi Ellie, You are absolutely right. Do you know, I always had it in my mind that only very intelligent people got this. Always seemed to me to be high flyers but that is because of where I live I suppose.
    Best wishes
    Fru

  5. #15
    Forum Member ccinjersey's Avatar
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    So true.

    There was this Mom in school when my kids were young, she was a total health nut. Only ate organic, and was a runner in marathons, she was always in her gym clothes but she developed stomach cancer and passed away. It was a total shock to the community and of course devastating to her young family.

    It was just mind boggling to everyone how a young, healthy person who seemed to be doing everything right became so ill.

    xox
    Love feels no burden, thinks nothing of trouble, attempts what is above its strength, pleads no excuse of impossibility; for it thinks all things lawful for itself, and all things possible.

  6. #16
    Forum Member Dvd's Avatar
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    Hi all .. just reading these posts with interest ..here are two cases that were completely different sports / couch potato .. Both same age ..Diagonised with Bulbar ..had the same consultant
    Some of you that know me will know i cared for my friend Michael until his passing ..
    Michael was diagonised with Bulbar in 2015 .. Michaels life style .. he never played or participated in any sports and never into healthy living as per diet etc .. .was a smoker for many years but did give up 10 years before his passing ..yes he did go out walking but never power walking .. loved watching TV ..
    Case 2 is a guy that lived in the same village as I do ..from an early age ( 17 ) he was into his weights, muscle building etc .. was very competitive and entered many competitions in body building ..he was also diagonised with Bulbar MND a few months before Michael ..he was the complete opposite of Michael .. Two very different life styles .
    Someday we may find out what is at the root of this terrible disease ..
    Dvd
    Last edited by Dvd; 20th September 2017 at 07:02.

  7. #17
    Forum Member WendyWooG's Avatar
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    Sticking my hands up and admitting to couch potato status!
    Never been into exercise and overweight since having my kids. I did have a stressful job which involved me being out on site exposed to exhaust fumes a lot. So I put it down to genetic weakness triggered by toxins.
    I would be sooooo good to know though.

  8. #18
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    Gibbo sorry to hear someone as young as you got MND. I am bit older 68 yrs and was formally diagnosed two weeks after my 65th birthday. I had always kept myself fit I played rugby non stop until 38 yrs then few games after. I played water polo and squash and as older always out walking with my dog and swam twice a week. About a year before I had pain in left hip and assumed too long in the front row. I was 16 stone and now my MND just down my left side. My speech gone and have feeding PEG but still managing to eat ok. My swallowing still ok and breathing. I need to hoisted in out of bed and chairs but can get around in my Salsa m2 wheelchair.
    Best wishes John

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