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    #1

    Ask the experts

    Thought this interesting. I have asked why military personnel are more likely to have mnd.

    At 7pm, on Tuesday 13th September, Professor Kevin Talbot will join Jill Douglas, CEO, and Sean McGrath, Medical Strategy Lead, in a discussion about the causes of MND. Please submit your questions on this topic using the form below.

    https://docs.google.com/forms/d/e/1F...0GivA/viewform
    Diagnosed May 2021 bulbar onset als.
    Tags: None
    #2
    shelly21 thanks for the link. I would like to try and watch that session. Can someone watch a stream on Facebook or twitter without having an account? I asked about the exercise link.
    Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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      #3
      Zante it is the my names doddie foundation page on Facebook. They are streaming it on YouTube also.
      hopefully you can watch it that way.

      My Name'5 Doddie Foundation
      https://youtube.com/channel/UC8Lc2uR6EkjdLfwQVrEyCcw
      The official YouTube channel of the My Name'5 Doddie Foundation. The Foundation was set up in 2017 by Scottish Rugby legend, Doddie Weir and friends following his Motor Neurone Disease diagnosis. It aims to raise awareness and funds to find a cure to MND and support sufferers of the disease.
      Diagnosed May 2021 bulbar onset als.

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        #4
        Live now Ask the experts
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
        ​
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          #5
          Thanks shelly and Ellie.

          Doug
          Diagnosed April 2017
          • Likes 1

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            #6
            Interesting. It's genetic, more than expected, age related, obviously.

            Very much analogous to a car engine with a dodgy part or misfitted gasket. People with good engines enjoy using it.

            It would be exciting to put various signals through nerves to figure out how they work.
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              #7
              The size thing was interesting. Also it made it so clear how complex it is.
              Diagnosed May 2021 bulbar onset als.

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                #8
                I found this really interesting to watch. But also came away thinking how on earth do they even begin to understand a disease where it starts differently and affects people differently and no one knows a cause. So much research and it sounded like a lot of steps forward. The healthier patients with small hospital notes and active backgrounds patients is a common trend .. and yet exercise once diagnosed leads to a better prognosis he said so exercise doesn't cause it . I can't find anywhere when they said they would post the questions and answers that they didn't get time to cover. Has anyone found that info? X
                Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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                  #9
                  Originally posted by Zante View Post
                  I can't find anywhere when they said they would post the questions and answers that they didn't get time to cover.
                  She said it will be posted on their website in a few days. xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                  ​

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                    #10
                    Ellie brilliant thanks for that. Will keep a check. Xx
                    Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.
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                      #11
                      I can only speak about C9orf72 MND (one of the most common types),which I have researched.
                      For this specific variety of MND, there is evidence linking strenuous exercise to people getting the disease earlier. There's a possible explanation for this. The c9orf72 gene is clumped together with an adjacent interferon gene, usually inherited together and often activated together. When you engage in strenuous exercise, it is known that your interferon levels rise and c9orf72 expression probably along with it. This might be the main reason why sports and military people tend to get it younger?
                      I would caution about keeping exercise gentle, rather than strenuous, in my opinion.

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