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    Possible eye

    I'm probably tempting fate but I am putting on weight, peeing for England, moving my bowels without drugs and generally feel better than I have for a long time. Eye of the hurricane or a last stand? 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

    #2
    Enjoy it while you can. It's nice to have positive things no matter what they are 😘

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      #3
      Good to hear that Matthew.

      I think your decision to get a catheter was a great one, and pivotal - getting enough fluids in is easy-peasy now, getting fluids out is even easier πŸ‘πŸ‘πŸ€©

      Add in the carers and that you seem happier and more content in yourself with less day-to-day stress, that's a win-win situation for you.

      I am SO happy that you're in a good place.

      Much love πŸ€—πŸ€—πŸ€—πŸ˜˜πŸ˜˜πŸ˜˜πŸ’–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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        #4
        matthew55 that's great news that you're feeling generally better....on a Sunday too....long may it last and maybe the start of a better phase now you've got 'things' more sorted. Brilliant!!!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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          #5
          It’s wonderful to have things to celebrate! Enjoy! X

          Comment


            #6
            Great news that your feeling great just go with it obviously if you have a miracle cure please share πŸ˜€
            Never thought I would say this but having a catheter is a real positive and has given me a lot more freedom no more impossible to access disabled toilets. Just need bottle to empty bag and go
            .Saying this I have discarded some of the NHS catheter equipment and found lots of online suppliers - I prefer a shorter leg bag rather than the NHS one which ended at my ankle a bulging bag of pee hanging down from my trousers was not the look for me.

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              #7
              Thank you Matthew for sharing this uplifting news. It's just great that you're feeling better than you have and I have everything crossed that it continues.

              Love and hugs to you,
              Debbie x

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                #8
                This is lovely news Mathew and long may it last. It’s always good to hear something nice 😍

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                  #9
                  No NIV, XyliMelts and discharge overnight catheter bag means eight glorious hours sleep, perchance to dream. 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

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                    #10
                    You are up early sleeping beauty! I was awake about 3am woken up by a helicopter going round and round.

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                      #11
                      I slept all night for a change but then ended up wetting the bed as couldn’t get up quick enough 😬
                      Janette x

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                        #12
                        oh nettie. thats so upsetting.

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                          #13
                          Least I had a good sleep πŸ˜‚πŸ˜‚
                          Janette x

                          Comment


                            #14
                            Originally posted by Nettie View Post
                            Least I had a good sleep πŸ˜‚πŸ˜‚
                            Every cloud, eh Janette!!

                            Sorry it happened to you, though love that you can have a laugh about it and, at least it didn't happen on your new celebratory bed linen πŸ‘πŸ‘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


                              #15
                              Originally posted by denise View Post
                              I was awake about 3am woken up by a helicopter going round and round.
                              It was the police looking for 2 escapees from Portugal πŸ˜‚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

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