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    Respiratory clinic....

    ...yesterday.

    Awful.

    How the hell do you cope with a Nippy, let alone a cough assist machine?!

    Exhausted!

    Doug
    Diagnosed April 2017

    #2
    Hi Doug.

    Relaxing is a big help - the more of a normal breathing pattern you have, the quicker you get used to things. If you are even a wee bit anxious, try using the Nippy (NIV) for a short while whilst listening to music, watching TV etc, something to distract you from focussing on your breathing - the machine is set up to take its cues from your own breathing pattern, so if you're breathing hard and fast, it tries to keep up. Don't fight it!

    The folk who find it strange do get used to it soon enough and using it becomes 2nd nature, honestly, especially as NIV benefits are quick to materialise.

    Similarly for the cough assist machine, it's a case of mind over matter and, like using a Nippy, its benefits are felt.

    I'm sorry you need NIV, Doug, but happy you got one and hope you feel better once you start using it nightly. And remember, there are several mask shapes, types and sizes so, if your current one is not suitable, try an alternative.

    Love Ellie.

    ​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
      Many thanks Ellie.

      I'll persevere..

      Love

      Doug
      Diagnosed April 2017

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        #4
        Mick really took to the nippy. On the first night his co2 level when from a good 8 plus to about 6

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          #5
          Stephen took to his. I thought he's not going to like this. He's going to keep complaining but it was a complete surprise. He really liked it.
          have to admit I tried it. I do think you need to create a calm space, and then give it a go. Frightened the life put of me. I was really disappointed. I think I'd like to give it another go but try and chill first. I hate to say it but it reminded me of going to the dentist as a kid and them putting the gas mask over my face.
          That comment probably didn't make you feel better but I'm thinking if there's like a fear dating back years ago it might be putting you off.
          love and hugs Denise xxx
          when i can think of something profound i will update this.

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            #6
            Hey Doug, hopefully you have grown to love the benefits of using your Nippy, or are tolerating it at least!

            I know it's not particularly easy for you to post right now, so no need to reply. If you're struggling, a one or two word post would be enough to type to get advice from NIV/BiPAP/Nippy users.

            Thinking of you.

            Love Ellie.
            ​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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              #7
              Sending love and hugs to you Doug x

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                #8
                Thanks Ellie.

                I'm trying.

                Yes, curling fingers make typing difficult.

                Doug
                Xx
                Diagnosed April 2017

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                  #9
                  Hi doug
                  we all miss you and think of you.
                  love and hugs Denise xxx
                  when i can think of something profound i will update this.

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