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    #1

    Breathing

    At my recent appointment with my mnd clinic my breathing test (blood from ear lobe) came back as ‘normal.’ My visit from my Speech and Language specialist today put an oxygen meter on my finger as she asks me to drink water and that measured ‘normal’ also. She said that my swallow was‘normal’ too. I’m still just about walking a walker. Happy days 😊, Lynne x
    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.
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    #2
    Normal CO2, normal O2 Sats, normal swallow - all good Lynne 👍👍

    And do you feel yourself that your breathing is good both during the day and night? I know most of us haven't had our pulmonary function tested in a long while, thanks to Covid. xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user    .
    ​
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      #3
      Yes Ellie. I think breath stacking occasionally has kept my breathing stats normal 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.
      • 👍 2

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        #4
        Lynne K that's great news 🤗😘
        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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          #5
          Yes, thanks Linda x
          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.
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            #6
            Celebrate the little things as well as the big things. We Are Worth It! 😁🤗😘😍xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx
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              #7
              Hi I don’t know what breath stacking means? Can someone explain please
              Mary

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                #8
                You take a breath in and then, without breathing out, take another and repeat. Three is the best I could manage. 👍😁🤗😍xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment

                  #9
                  Breathing and ventilation | MND Association
                  https://www.mndassociation.org/support-and-information/living-with-mnd/breathing-and-ventilation/
                  Breathing can be affected by MND, but there is a lot of support available. Select from the following to find out more. “Ask your professionals to explain things…my own experience has shown that you are often not prepared early enough.”  Person with MND How does MND affect breathing? MND does not stop air being processed by... Read more »

                  Mary C what Matthew said and the above links👍
                  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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                    #10
                    Lynne K Delighted for you Lynne. Do you know what your actual readings were? At my Respiratory clinic last week, my CO2 was up a bit and Oxygen down a bit. Nothing to worry about they said and will repeat the ear lobe test in 6 weeks time.
                    Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.
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                      #11
                      John I got the letter sent to my GP with the blood results on so yes I have seen them. My oxygen on Tuesday I looked whilst the meter was on my finger and that was 95%. I guess that’s normal as the Speach and Language Therapist said so. Lynne x
                      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

                        #12
                        I get why this is fascinating but I really think there are better ways to occupy your mind. Just saying. 😉😁😘😍xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          #13
                          Bit harsh matthew. Have you fell put of bed the wrong way
                          Diagnosed May 2021 bulbar onset als.
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                            #14
                            Wasn't meant to be. I'm just trying to give a little of my experience. Sorry if this upsets anyone
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                              #15
                              Its like your saying a topic is not important. Not sure you meant to come accross that way. Breathing is mega important for me also.
                              Diagnosed May 2021 bulbar onset als.
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