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    Respiratory

    Well my respiratory appointment was good. Blood gas, co2 really good. Basically from oximetry when I go into dream sleep my oxygen dips and wakes me up.
    so only mild at the moment.

    Issued the nippy 4 which is tiny and comes with a battery. I've been given a tiny nebulizer also. All meaning I can get them on bedside table.

    The cough assist is bulky but seriously I've used it twice and its helping lots.

    Ellie your info on the humidifier is a great help thank you.

    I can understand now why some cannot tolerate n.i.v it is a weird sensation. I plan to build up over a few weeks.

    X
    Diagnosed May 2021 bulbar onset als.

    #2
    That as good as one could hope for I guess...

    Which mask did you get? xx
    ​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
      Ellie its got words 'airfit f30' small and goes under nose and sits just under the lip.x
      Diagnosed May 2021 bulbar onset als.

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        #4
        shelly21 For me, those type win hands down for comfort, I love mine xx
        ​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
          That's good news shelly21​​​​​​, glad you've got some equipment that will hopefully help.

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            #6
            shelly21 - I hope you get on OK with it all. My latest CO2 was fine so all seems OK at the moment but I do feel NIV is something I need to start reading about and getting my head around, so your post has been really helpful, thanks x
            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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