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Hello and Data Collection

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    Hello and Data Collection


    Can I start off by saying that I have never used a forum before, am not sure if I will emotionally cope in doing so (!) and that my keyboard doesn't work as it should, so I will probably get frustrated at having to correct all the errors!

    Apart from that, I am all set!

    I have a very similar story to Bexxy (similar ages, young children etc), however. I don't want to post a bio at the moment as not quite in that place,

    I wanted to ask whether anyone is aware of any data collection that is being done?

    I apologise if I am already breaking forum rules.

    Since my husband's diagnosis he has been asked very few questions regarding his lifestyle. In fact I think the only thing he has been asked is whether he works with chemicals.

    In an attempt to find a cure, has anyone ever asked questions such as: were you breast or formula fed, have you had any traumas (eg operations or injuries), did you suffer any illness (stomach bug/food poisoning) before symptoms started to develop, have you travelled to a foreign country where you had malaria vaccinations (for example), do you use a cinnamon flavoured toothpaste (yes i am clutching at straws here and trying to be good not mentioning its name, do you have any other inflictions (eczema, heart arrhythmias, failed vasectomies) etc etc.

    I know I am sounding desperate, but I wondered if a link could be identified. If there could (even if it just shows the trigger), surely this would help?

    I don't know if this has been discussed before, or f there is a different part of the forum that references this.

    I am afraid my way of dealing with things is trying to be practical (husband's way of dealing with this is burying his head in the sand....although he is fully aware that I am posing this....yes, even the vasectomy part!).

    Anyway, I hope you don't mind me asking. Please don't hate me. My heart goes out (and cries) to everyone xxxxx

    Hi Smudge and welcome to the forum;

    You are not breaking any forum rules.

    Sorry to hear of your husbands diagnoses and that he is burying his head in the sand. That makes it very hard for you.

    There have been studies on most of the things that you have said and their relationship with Mnd.

    Please feel free to ask any questions or just 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.


      Hi Smudge and a warm welcome to the Forum.

      Sorry your husband has an MND diagnosis.

      I don't think you'll find an easy answer as to why he was unfortunate enough to get this disease, unless it's in his family, and I'd hate you to tie yourself up in knots worrying about it

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


        Hi 5mudge

        Welcome to the group. Sorry to hear that your husband is ignoring the disease and that must make it harder for you to cope. There have been various studies done about the causes of mnd and there have been some results such as former military personnel being more likely to have mnd along with people who play contact sports like rugby and football. I'm not aware of any links to diet or anything else though. I hope your husband comes around some time soon and starts talking to you about the diagnosis and what it all means.



          It’s understandable that you are wondering if there’s a causal link but evidence so far seems to be inconclusive. For example I’ve never been in the military or played contact sports, neither have I experienced most of the other possibilities you mentioned.


            Hi Smudge. Welcome to forums. I'm sorry about your husbands diagnosis and that you feel that he buries his head in the sand. You both obviously deal with stress and/or trauma in different ways, lots do. Despite you feeling the need for him to engage with you about the disease please be patient with him. He'll talk when he's ready.

            About causes of MND, you'd be worth millions if you could answer that question definitively. As said earlier researchers have sighted sports and other things but other scientists have questioned such results. The search is ongoing for possible causes of the various types of MND. About 10% of sufferers for example have genetic susceptibility.

            I have the C9ORF72 gene fault, other genes are implicated (another couple are SOD1 and SOD2). C9ORF72 usually doesn't show until people's 50s or later. Your husband could ask to be tested. But even knowing that anybody has a genetic fault isn't all of the story. Why some get it at an earlier or later time and speed of degeneration varies so other factors must be at play.

            I read every bit of research that I can get hold of and there's quite a few studies going on or about to start.

            I hope that the big shock that your husbands MND diagnosis was to both of you will subside and you each learn how to handle the day to day changes together.

            Take care, Lynne
            Last edited by Lynne K; 9 October 2019, 21:44.
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.