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    Shallow breathing

    My breathing seems to be getting more shallow everyday. In the event of diaphragm failure can the bipap “breathe” for me? My asthma inhalers just make me cough.
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

    #2
    Hi Rosemary,
    sorry to hear that your breathing is not good, have you had breathing tests done at the hospital?
    James x
    Foxes Never Quit 💙

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      #3
      Rosemary6NT like you I'm more worried about my breathing. Breathless now with even minor exertion. I'm ok just sitting.

      ​​
      I've asked for an early review with hosp respiratory team (was due March). Sorry I can't answer your bipap query...

      xx
      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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        #4
        Originally posted by Rosemary6NT View Post
        In the event of diaphragm failure can the bipap “breathe” for me?
        It depends what you mean by diaphragm failure - anyone with ALS needing BiPAP does so due to some degree of diaphragm failure and, those of us for whom BiPAP/NIV is recommended (whether we do so or not) are actually in Respiratory Failure, which sounds super scary, but we can live for a relatively long time in respiratory failure, especially with NIV support.

        A BiPAP machine alone cannot breathe for you, it's not like invasive ventilation in that respect, rather it supports your muscle function.

        Whilst most machines are programmed to initiate a breath if you have't taken one, it's more of a prompt to your body to breathe - it's then essentially up to your muscles to follow through on taking the breath and processing it through your respiratory system, if that makes sense.

        Your BiPAP settings may need tweaking if you're finding it hard on your body.

        Love Ellie (Queen Shallow Breather 😉) 😘😘
        ​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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          #5
          JamesW LindaB Ellie. Thanks for your responses, I guess I need to check if my bipap can be tweaked. It’s all a bit scary…
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

          Comment


            #6
            Originally posted by LindaB View Post
            Rosemary6NT like you I'm more worried about my breathing. Breathless now with even minor exertion. I'm ok just sitting.

            ​​
            I've asked for an early review with hosp respiratory team (was due March). Sorry I can't answer your bipap query...

            xx
            I can’t speak more than a few words now without having to use my bipap and not enough puff to use my inhalers 😕
            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

            Comment


              #7
              Originally posted by Rosemary6NT View Post
              ... not enough puff to use my inhalers
              You should be able to get asthma meds to use in a nebuliser - inhale them in a 'mist' rather than using a puffer - def worth asking about. xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Originally posted by Ellie View Post
                You should be able to get asthma meds to use in a nebuliser - inhale them in a 'mist' rather than using a puffer - def worth asking about. xx
                I’ve just put in a request, thanks Ellie xx
                Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                Comment


                  #9
                  Originally posted by LindaB View Post
                  Rosemary6NT like you I'm more worried about my breathing. Breathless now with even minor exertion. I'm ok just sitting.

                  ​​
                  I've asked for an early review with hosp respiratory team (was due March). Sorry I can't answer your bipap query...

                  xx
                  I hope you get one soon. It’s horrible isn’t it? Xx
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                  Comment


                    #10
                    Hooray, Oxford respiratory team contacted me today and have remotely tweaked my pressure and rise settings so I am getting more air. Much better 😀 Not good without NIV though 😕
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                    Comment


                      #11
                      Hi Rosemary..glad you got some advise.
                      As I mentioned before I chose not to use the NIV.Decided to rely on palliative care team whilst I go through respiratory failure.
                      Wishing you well
                      Mary x

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                        #12
                        Originally posted by Rosemary6NT View Post
                        Oxford respiratory team contacted me today and have remotely tweaked my pressure and rise settings so I am getting more air. Much better
                        Happy days Rosemary6NT that's great to hear.

                        Hope the new setting is good for sleep too - I have different day and night profiles, just to let you know that it's possible. 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
                          Originally posted by Ellie View Post
                          Happy days Rosemary6NT that's great to hear.

                          Hope the new setting is good for sleep too - I have different day and night profiles, just to let you know that it's possible. xx
                          Oh, thanks Ellie, I didn’t know that
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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