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    #16
    Yes I’ve got that one, might give it another go thanks x
    Janette x

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      #17
      I have a full mask at least for 11 hours but trouble with leaks last night velcro failure time to replace the straps. Also makes my nose bridge sore, ventilation team meeting at hospital week on Friday. Humidifier set at 3 still end up with a dry mouth all night apart from sali ca at start.

      john xxx
      Last edited by jd58; 5 January 2021, 14:01.

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        #18
        jd58 John, have a look at the picture of the Amara View mask I posted above. It doesn't sit on the bridge of the nose, as you can see, and is the comfiest mask I've ever had. It is similar to the Dreamwear mask, just depends on where you prefer the air to come in, front or sides.

        Maybe something to bear in mind on Friday.

        What is the highest humidifier setting? Does the heating plate def get warm enough?

        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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          #19
          Janette, I'll stop hassling you, I promise!! I just wanted to show a pic of pillows with cutouts for mask-wearing side sleepers. Search online for "CPAP Pillow" if anyone is interested.

          CPAP Pillow.jpg

          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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            #20
            Thanks Ellie, will have a look for one now love Janette x
            Janette x

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              #21
              Ellie do you buy them private or does the NHS provide them? At present I get a full mask from hospital. Pillow looks good too.

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                #22
                Thanks Ellie, John, Sue and Janette for the discussion. This prepares me for the future but I have pain issues even though I’m not on a NIV yet.

                I have a torn tendon in my left shoulder. My left hip has no labrum the cushioning that’s usually there, because it was scraped out in an operation for the tear that they couldn’t repair. This hip bones rub against each other and are always inflamed. So it’s painful to sleep on my left.

                My right side was my preferred sleeping side despite having RSI and nerve damage in my right arm (consequence of working for BT, constant keyboard use without breaks on the all night shifts). Now my right hip hurts after a couple of hours. That’s either arthritis or an MND cause. My left hip and shoulder hurt when I’m on my right side.

                I also have back pain that gets worse with no movement (severely degenerated discs).

                I used to take tramadol but I stopped it due to side effects. I just take paracetamol now which only has a small benefit but any improvement I’m grateful for, even that. I take 2 before bed and 2 some time in that night (after a minimal 4 hours). It awake often waiting for the 4 hours to pass so that I can take 2 more.

                Lynne
                Last edited by Lynne K; 10 January 2021, 22:59.
                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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                  #23
                  Like Lynne, I appreciate this discussion and sleeping tips. I'm not on NIV either yet but I can't turn over in bed without help.

                  I have got used to sleeping on my back as I am reluctant to wake my husband to turn me but I do wake up several times in the night... that's always a bad time for dark thoughts.

                  I never thought of Ellies suggestion about an air matresss for one side of the bed.... genius idea
                  !

                  I've tried a rail and a slippy sheet and they did help for a time. My hubby puts barrier cream on my legs and bony bottom before sleep to prevent pressure sores but I think this stops the limited movement I have.

                  I read until I am really sleepy... just need to make sure its not a thriller to keep me awake.

                  Love Debbie x

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                    #24
                    Originally posted by jd58 View Post
                    Ellie do you buy them private or does the NHS provide them? At present I get a full mask from hospital. Pillow looks good too.
                    The mask should be provided to you by whoever supplies your masks normally, so do ask on Friday.

                    Good luck x
                    ​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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                      #25
                      I don't know if this helps but a pillow between the knees takes some pressure off the lower leg or a pillow to rest the left knee on when lying on your right or vice versa.
                      if the nose gets sore, where the masks rests on the nose, a small cotton wool pad with aloe Vera on really does help.
                      Denise xx
                      when i can think of something profound i will update this.

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                        #26
                        Ellie message gone to the ventilation team in hospital. Cpap piiliow coming today and strap protectors

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                          #27
                          jd58 Result 🏆
                          ​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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                            #28
                            Hello
                            I still sleep in our double bed with an air mattress on my side and we have a king size bed raiser under the mattress. This was provided and fitted by the OT and local services. I sleep on my right side with pillows under many body parts !Under my left elbow to support my shoulder and elbow and under both knees and behind my back to support hips and back. It is trial and error but we have it sussed now.
                            Ellie what make is your mattress?

                            stay safe everyone x Sarah xx

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                              #29
                              Sarah, my mattress is a Meditec Pro2000XT. x
                              ​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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                                #30
                                Thanks Ellie x

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