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    Wythenshaw breathing assessment

    Sleep study results: cO2 low so can’t give breathing machine or could push c02 too low. Oxygen mostly ok but periods during night when don’t breath or breath too shallow. So I’ll be staying in to try bi-pap machine and various masks. C-pap forces air in to keep throat open then hopefully support breathing. Fingers crossed xx
    Last edited by Lynne K; 3 February 2022, 10:51.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    #2
    Fingers crossed that works for you Lynne K .i hope you're being well looked after.

    Hugs to you,
    Love Debbie x

    Comment


      #3
      Thanks Deb xx
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

      Comment


        #4
        Fingers, toes and eyes crossed for you 👀🤞😁🤗😘xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #5
          Lynne K thanks for the update...hope you're comfortable & well cared for 🙏💙
          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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            #6
            Originally posted by Lynne K View Post
            cO2 low so can’t give breathing machine

            I’ll be staying in to try bi-pap machine
            I'm a tad confused 🤔 (it dosen't take much!)

            Your tests showed sleep apnea so you are getting a breathing machine but it's a CPAP, not a BiPAP? Or are you trying a BiPAP to see how it suits your breathing? xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              It’s a c-pap definitely. I forgot which when typing but found out from physio later xx
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

              Comment


                #8
                Originally posted by matthew55 View Post
                Fingers, toes and eyes crossed for you 👀🤞😁🤗😘xx
                Thanks Mathew xx
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

                Comment


                  #9
                  Hope the CPAP improves your sleep quality Lynne K It must also mean that your breathing muscles are good, otherwise you wouldn't have managed CPAP air pressures 👍👍👍😘
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Originally posted by Lynne K View Post
                    Sleep study results: cO2 low so can’t give breathing machine or could push c02 too low. Oxygen mostly ok but periods during night when don’t breath or breath too shallow. So I’ll be staying in to try bi-pap machine and various masks. C-pap forces air in to keep throat open then hopefully support breathing. Fingers crossed xx
                    Good luck with the bipap, I use one all the time now. Xx
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                    Comment


                      #11
                      Lynne K sounds like they’re doing a thorough assessment of you, Lynne, and hope you’re fixed up with helpful equipment xx
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                      Comment


                        #12
                        Thanks everyone xx
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

                        Comment


                          #13
                          Staff said my c02 still low and oxygen ok. And another sleep study tonight to see if c-pap keeps me breathing deeply all night. Another earlobe stats test in early hours of morning and maybe home tomorrow and back next week for PEG and will take c-pap xx
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            Originally posted by Lynne K View Post
                            ... another sleep study tonight to see if c-pap keeps me breathing deeply all night. Another earlobe stats test in early hours of morning and maybe home tomorrow
                            Oh Lynne, let's hope a night on CPAP raises your CO2 levels so you can get home 🤞🤞 😘
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Breath on girl, we are all with you.🤗😁😘😍xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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