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Exercise and ALS webinar - Wednesday 28 July 9.00pm-10.30pm.

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    Exercise and ALS webinar - Wednesday 28 July 9.00pm-10.30pm.

    This topic comes up regularly, so some people might be interested in an upcoming webinar organised by the ALS Therapy Development Institue, based in Massachusetts, USA. (But times I have given are relevant to these islands, I converted it from the 4.00pm-6.30pm EDT you'll see advertised)

    One of the speakers is Dr. Johnathan Cooper-Knock, of the Sheffield Institute for Translational Neuroscience (SITraN)

    Here is the link Register here

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

    ​

    #2
    Ellie thanks will look in with interest πŸ‘πŸ˜‰

    Registered πŸ‘
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

    Comment


      #3
      I would but America?
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

      Comment


        #4
        Originally posted by matthew55 View Post
        I would but America?
        πŸ€” It's a video webinar.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        ​

        Comment


          #5
          If I knew what a webinar was I would probably agree with you. πŸ€”xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

          Comment


            #6
            But you know what video is 😁

            It's fine, you don't have to watch it, there won't be a quiz on it πŸ˜‰ - I know it's of interest to some. 😘
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

            Comment


              #7
              Fine whatever.
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

              Comment


                #8
                Forgot to explain: webinar is a seminar or conference over the web by video, rather than in-person attendance. xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

                Comment


                  #9
                  Ah I see. Still a bunch of self important egg heads talking drivel but what ever floats your boat. Live and let live I say. πŸ‘πŸ™πŸ˜‰πŸ˜˜xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                  Comment


                    #10
                    Originally posted by matthew55 View Post
                    ... a bunch of self important egg heads talking drivel
                    Actually, no.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    ​

                    Comment


                      #11
                      I have a lot of time for Johnathan Cooper-Knock - he's definitely one of the good guys and worth listening to
                      Best

                      Robin

                      Diagnosed 05/2017 Familial ALS Limb onset

                      Comment


                        #12
                        Guy That's good to hear, Robin, thank you. xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        ​

                        Comment


                          #13


                          It's fine, you don't have to watch it, there won't be a quiz on it πŸ˜‰ - I know it's of interest to some. 😘

                          Thanks for the link Ellie... A quiz could be arranged 🀣 I could put the words to music 🎢 πŸ˜‚

                          Seriously, there is an interesting article on exercise and MND in the latest edition of thumbprint. Xx

                          Comment


                            #14
                            Originally posted by Deb View Post
                            ... there is an interesting article on exercise and MND in the latest edition of thumbprint.
                            Oh, thanks for that Debbie, I'll keep an eye out for it. xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            ​

                            Comment


                              #15
                              Ellie I completely forgot to join in duh πŸ™„ hopefully can watch the recording πŸ‘
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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