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ALS TDI Summit Friday 5th November.

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    #31
    I listened in for the 1st hour and will look forward to the recording for the rest. Much of the terminology new to me too...but fascinating. My biggest take home, even from that hour, was how determined and driven the scientists involved are! Devoted to finding better treatments for slowing down...stopping...reversing ALS/MND...
    We live in hope๐Ÿ™โœŠ๐Ÿป๐Ÿ‘๐Ÿป
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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      #32
      Ellie in the early part of this year I was very keen on researching everything but as the reality started to kick in I dropped the research and started a painting course online which took all my focus. From a completely detached standpoint it is the most fascinating problem untangling the cause/causes of the various MNDโ€™s but so much to read and learn and try to make sense of! My DNA analysis shows that none of the common genetic causes are there. Interestingly (to me, sorry this is all about me ๐Ÿ™„) I read that amongst the โ€œhigh riskโ€ occupations are agriculture and construction/carpentry. It so happens that the first 18years of my working life were spent in agricultural research as a biochemist until I went off the tracks a bit and became a full time craft woodturner which I only retired from as I became physically incapable of continuing. Coincidence? Anyhoo, Iโ€™ve started back with a little bit of research now and again when Iโ€™m in the mood. Sorry for waffling.
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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        #33
        Originally posted by matthew55 View Post
        Sorry I won't be able to attend I'm too busy watching paint dry ๐Ÿ˜‰๐Ÿ˜๐Ÿ‘€๐Ÿ˜xx
        ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚
        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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          #34
          Originally posted by Rosemary6NT View Post
          I read that amongst the โ€œhigh riskโ€ occupations are agriculture and construction/carpentry. It so happens that the first 18years of my working life were spent in agricultural research as a biochemist until I went off the tracks a bit and became a full time craft woodturner which I only retired from as I became physically incapable of continuing. Coincidence?
          The general consensus is that a multistep process requiring six distinct steps leads to the onset of sporadic ALS. These six exposures are both genetic and environmental, and the final one is the onset trigger, so we basically had 5 chances to dodge the ALS bullet, but didnโ€™tโ€ฆ

          That requires a special amount of (bad) luck, eh xx


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

          โ€‹

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            #35
            If it wasn't for bad luck I'd have no luck at all. ๐Ÿ˜‰๐Ÿ˜…๐Ÿ˜˜๐Ÿ˜xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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              #36
              Ellie that's interesting. Now you've done all the hard work researching are there any digestible references you can point me to? xx
              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                #37
                Rosemary6NT I found this paper on the multistep process.

                It is very detailed but you can skip sections, the stats and maths if that's not your thing, without losing significant context. Give it a go. xx
                โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                โ€‹

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                  #38
                  Ellie Thanks Ellie, that's great, I will look at it later xx
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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