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    Breathing

    During the day my breathing is normal but as soon as I lay down to sleep I have real problems breathing out. I suppose my Best Before date has been brought forward again. πŸ˜‰πŸ˜x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    I developed that issue in 2011 😏

    Do you want to get assessed for NIV (Non Invasive Ventilation) ?
    ​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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      #3
      Hi Matthew,

      yes i have same issue. As Ellie suggests get a referral for NIV. I have a NIV machine, a hospital bed which lifts me to 45 degrees for sleeping on my back. You soon get used to it.

      Also I have added recently an upside down β€œv” cushion from Argos which helps keep me in position for a comfortable nights sleep.

      hope this helps

      Nick

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        #4
        Thanks Nick, yes it sounds like a no brainer. I will be sad to loose my bed. The best I have ever had and it's not even christened. πŸ˜‰πŸ˜x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

        Comment


          #5
          Hi Matthew, sorry to hear that. I am going the same way too, especially lying down on my back
          Diagnosed July 2020, ALS bulbar onset.

          Comment


            #6
            Thanks but you know the only thing I have ever been sure of happening in my life is my death. Sooner or later it calls us all. πŸ˜‰πŸ˜x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #7
              I just had the best nights sleep thanks to you guys. A little judicious use of four pillows and bingo! 45 degrees or thereabouts. Thanks again πŸ˜πŸ‘x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

              Comment


                #8
                You should try getting help with your night time breathing. Stephen sleeps so much better. Took a bit of getting used to his mask but it really helps.

                Comment


                  #9
                  I just asked my team for an assessment 😁😍x
                  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
                    The weird thing is he used to complain of needing a pee every few hours but after getting the mask he was going 8 hours without. Don't ask me how that works but it's still true after 6 months. πŸ€”

                    Comment


                      #11
                      Originally posted by matthew55 View Post
                      I just asked my team for an assessment
                      Delighted to hear - I need you around for longer πŸ€—
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

                      Comment


                        #12
                        Just on my way to Salford for another needle in my ear and a rare face to face with my neuro. I'll update when I get back. 😁x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #13
                          Well my ear said perfect but I'm being referred to the Wythenshaw cos they have better equipment for checking. I'm also getting a decent pain killer so a good visit. 😁x
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                          Comment


                            #14
                            matthew55 Good that your levels were normal but there can be quite a difference in CO2 figures - a 4pm CO2 level after being upright all day could be significantly different to a 7am level, having been supine for 8hrs. Hopefully you'll get an overnight Sats monitor from the Wythenshawe which should give a decent picture of your O2 levels throughout the night. (it doesn't monitor CO2)

                            Be aware that some strong painkillers cause constipation 😱😱 - just when you thought things couldn't get any worse...
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            ​

                            Comment


                              #15
                              Funnily enough that's what my neuro told me so the one he's giving me doesn't effect that area. Oh and they were going to give me an overnight today but he's happy to leave it for the other guys. 😁x
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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