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    Niv

    If anyone is wondering where I've gone, I'm in Wythenshawe hospital for a second night. Breathing assessment. First night was monitoring blood gas. I hardly slept. Tonight they expect me to sleep with the NIV on. I'm giving it a try but I think I've got much more chance of success at home. I've never been able to relax in hospital and I can't see that changing now.
    Each day is made easier with a bit of humour.

    #2
    Gary. Best wishes. Hope you can / did get some sleep

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      #3
      Thanks for checking in, Gary.

      Yes, you're right - hospitals are difficult places in which to get quality sleep! Just get through tonight and you can get home to relax, catch up on sleep and get used to using NIV.

      Love Ellie x
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Originally posted by Ellie View Post
        Thanks for checking in, Gary.

        Yes, you're right - hospitals are difficult places in which to get quality sleep! Just get through tonight and you can get home to relax, catch up on sleep and get used to using NIV.

        Love Ellie x
        That's sort of my plan.
        Each day is made easier with a bit of humour.

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          #5
          Hi Gary

          I hope that you get some sleep and go home tomorrow x

          love Sarah xx

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            #6
            Originally posted by GaryM View Post
            If anyone is wondering where I've gone, I'm in Wythenshawe hospital for a second night. Breathing assessment. First night was monitoring blood gas. I hardly slept. Tonight they expect me to sleep with the NIV on. I'm giving it a try but I think I've got much more chance of success at home. I've never been able to relax in hospital and I can't see that changing now.
            I was the same only managed about hour and half all night for the assessment,hope you sleep better tonight 🤞🏻Good luck with the NIV xx
            Janette x

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              #7
              Oh Gary you should have said. Did think it was quiet.

              Stephen had his niv brought to our house. We were shown what to do and he got used to it quite quickly. He was relaxed and fairly happy. We had a lovely technician we told us to call anytime.

              Don't see the point in trying to monitor anyone where they don't feel comfortable.

              love and hugs Denise xxx

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                #8
                Wishing you well Gary

                Richard
                Richard

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                  #9
                  Take care Gary. Thinking of you

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                    #10
                    Morning Gary,

                    I hope you got some sleep last night and are now on your way home. I hope the NIV works for you and do let us know how you get on.
                    I’m going to do this even if it kills me!

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                      #11
                      Hi Gary. I hope things improve for you and the NIV makes life a little easier. You’ll feel better when you get home . Best of luck . Lizzie x

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                        #12
                        Hope you're home soon Gary and you can rest ! I hope you get used to the NIV too. It must be impossible to relax in hospital.

                        Love Debbie x

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                          #13
                          Thank you for all your messages of support. Home now with a mountain of equipment. I'm not trying the NIV tonight, I want to try and catch up on some sleep. Like Matthew said sometimes the awareness of MND is lacking even in departments that deal with a lot MND patients. They think that just because you can press a call button you're okay. They don't realise that if you have no voice and no mobility you end up worrying about losing your grip on the call button, because nobody comes to check.
                          Each day is made easier with a bit of humour.

                          Comment


                            #14
                            Welcome home, Gary. Hope you get solid sleep tonight.

                            Originally posted by GaryM View Post
                            I'm not trying the NIV tonight, I want to try and catch up on some sleep.
                            I think that's wise! x


                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              I hope that you catch up sleep quickly Gary. It is hard to sleep in noisy bright hospital wards. That’s why the last time that I was in I took an eye mask to block out light and headphones for my phone so that I could do the same as I do at home and listen to Radio 4/World Service all night. It worked but I didn’t have a full night as sleeping in a strange bed is challenging on it’s own, love Lynne
                              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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