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    Originally posted by Ellie View Post

    Breathing πŸ€”
    Could be…. it has been on its way out for a while now x
    Foxes Never Quit πŸ’™

    Comment


      I guess hes breathing or he wouldn't be posting 🀣
      when i can think of something profound i will update this.

      Comment


        JamesW Might be an idea to ask for an overnight pulse oximetry test, rule it in or out.

        Any idea what your average daytime Sats are? 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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          Ellie Just checked my SATs and at 97%. I had a lung function test not so long back which showed more decline but still within acceptable limits …..my consultant says he will refer me to respiratory when I need him to.
          Foxes Never Quit πŸ’™

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            Morning everyone. Wet here. 😐 I know we need it but....
            when i can think of something profound i will update this.

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              Well, look at me saying Good Morning Lovelies 🀭😘😘

              Wheelchair people coming later with a new headrest and improved lateral supports to try and stabilise the Leaning Tower of Elsie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              ​

              Comment


                Originally posted by Ellie View Post

                Wheelchair people coming later with a new headrest and improved lateral supports to try and stabilise the Leaning Tower of Elsie.
                Would a couple of well placed wedges sort the problem out?? 😘
                Foxes Never Quit πŸ’™

                Comment


                  Originally posted by JamesW View Post

                  Would a couple of well placed wedges sort the problem out?? 😘
                  Ooh no, I am muuuch too precious for mere wedges πŸ‘ΈπŸ€£πŸ€£

                  Seriously though, foam wedges give me pressure marks, so the solution was to go in from behind my bespoke backrest, which has some lat support already, and angle it more, if that makes sense. xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

                  Comment


                    Hope they find a happy equilibrium for you Elsie. Good afternoon all x
                    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                      I think folk have commented about my stability in the past, but I think that was more about my surroundings and what I say or get up to, rather than physical symptoms...
                      2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                      Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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                        I am leaning no more ⬆​ πŸ‘πŸ‘
                        ​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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                          Originally posted by Ellie View Post
                          I am leaning no more ⬆​ πŸ‘πŸ‘
                          β€˜Upright Elsie’ πŸ˜˜πŸ˜˜πŸ˜˜πŸ˜‚πŸ˜‚πŸ˜‚
                          Foxes Never Quit πŸ’™

                          Comment


                            Originally posted by JamesW View Post

                            β€˜Upright Elsie’ πŸ˜˜πŸ˜˜πŸ˜˜πŸ˜‚πŸ˜‚πŸ˜‚
                            Better than Uptight Elsie...

                            Who knew that by recognising my centre of gravity didn't run down the middle of my chair, and that placing my new headrest 4cm off-centre would be so bloody marvellous πŸ‘πŸ‘
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            ​

                            Comment


                              Ok I'm just checking if I'm in the early bird club. Talk of being upright I was beginning to think that this was an outing you had all indulged in and this was the day after. I was quite jealous. πŸ€£πŸ˜˜πŸ€—
                              when i can think of something profound i will update this.

                              Comment


                                Like we would leave you behind xx
                                Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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