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    Niv

    Getting used to nippy4 - 6 hours last night incl one alarm

    Problem is horribly dry mouth. Is there humidifier?

    Out of aces

    Doug x

    #2
    I get dry mouth a lot and there are lots of products that help but I'm having NIV soon so other suggestions are welcome. Stay Strong 😁x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      You've made great progress, Doug - fantastic news!

      Yes, there is a humidifier (I couldn't sleep without one) If you don't have the water chamber, ask your resp team for it.

      Here's the video:


      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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        #4
        Fabulous Ellie!
        Thanks!
        Doug x

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          #5
          Glad you’re doing well with it Doug 🤗 x
          Janette x

          Comment


            #6
            When it's my turn to need NIV, probably sooner than I'd like, I know that Louise is going to hate all this technology. I've always been the tech geek in our house.
            Each day is made easier with a bit of humour.

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              #7
              Gary, the NIVs are pre-set and (usually) locked, so it's just a matter of turning on the machine and putting on the mask.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                By the time I put NIV, Cough assist and suction machine by my bed I won't be able to get in it 😁x
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #9
                  I have 6 things needing to be plugged in all night, every night to sleep. Good job we've night rate electricity!
                  ​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 Ellie View Post
                    Gary, the NIVs are pre-set and (usually) locked, so it's just a matter of turning on the machine and putting on the mask.
                    That's a relief, Ellie. As my abilities desert me one by one, I do get a bit stressed about Louise having to take in so much. I've always absorbed info like a sponge, but Louise prefers to keep things simple.
                    Each day is made easier with a bit of humour.

                    Comment


                      #11
                      Originally posted by matthew55 View Post
                      By the time I put NIV, Cough assist and suction machine by my bed I won't be able to get in it 😁x
                      That made me laugh, Matthew. It's a bit different from when we were young and came in from a night out and just crawled into bed.
                      Each day is made easier with a bit of humour.

                      Comment


                        #12
                        Originally posted by Ellie View Post
                        I have 6 things needing to be plugged in all night, every night to sleep. Good job we've night rate electricity!
                        I think we might need some extra sockets in the bedroom.
                        Each day is made easier with a bit of humour.

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                          #13
                          I use a plug board.
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            When I had my garage converted to a bedroom I had 12 sockets installed and they’re all in use.
                            Sporadic MND/ALS - Limb onset - Diagnosed May 2016
                            night time NIPPY, cough assist, PEG (not currently used)


                            Today is the tomorrow I feared yesterday

                            Comment


                              #15
                              AndyB Blimey, hope you've night rate too 😯

                              The amount of power we use must add quite a bit to the bills, all the same...
                              ​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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