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    #16
    Interesting Ellie. You’re a mine of information as always. Thanks, Lynne x
    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.

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      #17
      That makes us feel a bit less unlucky Ellie - (I think :-|) x

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        #18
        Maybe you're right Gordan1111

        I see it as having 5 chances to dodge the ALS bullet before the fatal 6th step was triggered 😟

        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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          #19
          So Albert had no chance.................straight off the rugby pitch to the boozer!
          Husband Albert diagnosed PMA Feb 21

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            #20
            Hmmmm. Very interesting.

            Dad had a subdural haematoma about 20 odd years ago, and he was told he might have 'consequences' in later life.... He fell off a ladder and hit his head, concussion, A&E, but it wasn't picked up until a day or two later. Translation 'bleed on the brain'.

            As a side note, he doesn't drink much, and never did, never exercised/not in a sports team, used to smoke about 35 years ago but very lightly (didn't inhale - where have I heard that before?). No-one else in the family diagnosed with MND or anything similar, so, no genetic trace or investigation.
            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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              #21
              Intensive exercise doesn’t fit my profile at all. I loathed PE at school and have not felt the urge to take up any sport or exercise since I left fifty years ago. The only thing I have done to improve my health is to walk or use public transport, rather than my car, whenever possible. Nor have I had any injury or hospitalisation, except a couple of nights’ observation after a minor road traffic accident back in the seventies. I would like to know what percentage of people who currently have MND fulfil the Sheffield definition of high intensity training. I naively thought when I signed up to the MND Register that I would be filling in detailed questionnaires to establish what I had in common with other sufferers, but since I have been asked nothing about myself, I presume they’re just counting the days between diagnosis and death.

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                #22
                Yes, it is true and I am so mad, nay furious that my Consultant did not run on to the squash court and warn me that I should really take a whole genome test first.

                But then again, I have a lot of memories of great victories that I can forgive the Consultant.

                https://www.youtube.com/watch?v=GC5E8ie2pdM
                Copyright Graham

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                  #23
                  It is what it is and does what it does. 😁x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #24
                    Cheers PositiveVibes, Graham, SallyAnne, Matt. I was just kinda wondering how many fitted that profile. As Ellie pointed out there may be lots of triggers. (Keep living SallyAnnn - just to annoy them x)

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                      #25
                      Originally posted by Graham View Post
                      Yes, it is true and I am so mad, nay furious that my Consultant did not run on to the squash court and warn me that I should really take a whole genome test first.

                      But then again, I have a lot of memories of great victories that I can forgive the Consultant.

                      https://www.youtube.com/watch?v=GC5E8ie2pdM
                      Graham you surprised me with your diverse music taste. This song would always get me on the dance floor. Happy memories indeed.
                      I’m going to do this even if it kills me!

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                        #26
                        Does everyone know what the 6 steps are that Ellie mentioned? I certainly don't. Is there a link i can go to to find out more aboutt these?
                        Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                          #27
                          Hi Evelyn. I'm not sure. I assumed there some risk factors but they've always seemed ill-defined. I haven't previously heard it postulated that they were known quantities. Perhaps Ellie knows more

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                            #28
                            EvelynMW The paper, was published in The Lancet in 2014. I have an account with them and, as the article is only viewable if logged in, any link I post won't work. This article is available for free, you just need to register to read it: search for "Analysis of amyotrophic lateral sclerosis as a multistep process: a population-based modelling study"

                            My Neurologist is one of the authors, so I've been aware of it, have heard it being discussed and have chatted about it.
                            ​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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                              #29
                              Thanks Ellie. Yes only the abstract is visible isn't it. I see it says: "A linear relationship between the log incidence and log age of onset of amyotrophic lateral sclerosis is consistent with a multistage model of disease. The slope estimate suggests that amyotrophic lateral sclerosis is a six-step process. Identification of these steps could lead to preventive and therapeutic avenues"

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                                #30
                                I wonder if you need all six to occur simultaneously like ducks lined in a row

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