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

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    #16
    LindaB I found it worth watching, apart from the first 10min of cringey Zoominess (hello, hello, who's there, can you hear/see me mullarkey🥴😏)

    They said the recording will be available next week. 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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      #17
      I think it's available already will take a look later....all that zoominess (good word) is hilarious of course there's no meeting without the words 'you're on mute' 🙄🤓
      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.​​​​​​

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        #18
        Yes Ellie I've watched and thought it useful. I had worried about excercise or not and this has answered that for me. I feel I need to do more while I can - so that might motivate me 👍
        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.​​​​​​

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          #19
          I don't even know what day it is. 😳
          when i can think of something profound i will update this.

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            #20
            This is the recording of the "Exercise and ALS" webinar from a few days ago. The first part is a discussion exploring if exercise increases the risk of developing ALS and the second part discusses the benefits of exercise post diagnosis.
            ( SallyAnnB you should find the second part particularly relevant to your recent posts) 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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              #21
              Ellie Thanks Ellie. I’ll try to watch it tomorrow.

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                #22
                Ellie The two talks were very interesting, thank you. I didn’t have time to listen to the entire Q and A session, but the information contained in the second talk was, as you surmised, very interesting to me. If only I lived 15 miles further north then I would come under Sheffield and hopefully encounter less resistance when I suggested anything that I think would be beneficial to me. I’ll try to pursue other avenues to get help with targeted exercise.

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                  #23
                  Glad you found it useful and are pursuing physiotherapy SallyAnnB Could you switch to Sheffield MND Care Centre? 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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                    #24
                    I don’t know. I attend the large regional hospital for the county I live in and assumed that hospitals, like schools, had catchment areas. I did apply to be part of Sheffield’s research programme and was in sporadic communication with them until they said that multiple MRI scans were involved. After I informed them that I couldn’t manage that as I’m claustrophobic, I haven’t heard anything since. Thinking about it retrospectively, maybe multiple scans would have helped me cure my claustrophobia!

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                      #25
                      SallyAnnB There website says:

                      "The clinic receives more than 1,200 patient visits per year, over 120 of which are new referrals. We care for patients from across the South Yorkshire region and from the whole of the UK."

                      So definitely worth contacting directly or asking your Neuroligist (there are contact details on the webite)

                      I had 4 MRIs for research and the kango hammer noises certainly take your mind off everything else 😊 You know you can provide your own listening too, if that's helpful? 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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