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Hello I’m Douglas

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    Mick had the rig procedure in january, used his nippy throughout. not had to use the tube yet. I just put 50 ml water through daily, but its done now
    Hope they sort you out and you are home soon x

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      That was the worst night so far - every 8 - 11 breaths ALARM. The nurses gave me a break for ~15 minutes at 0200 and finally gave up about 0500

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        Oh dear. Hope that things ease so that you can sleep better. Lynne
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
        I'm staying positive and taking each day as it comes.

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          Sorry you had such a rough night Douglas, hope you can catch up on some sleep today (if the ward isn't akin to a railway station)

          Although I think I know what your reply will be... Did the nurse say which alarm was going off? Or even seem to know anything about the Nippy?

          If one knows what was triggering the alarm - they're shown on screen, for example, high & low flow, high & low pressure, high & low breath rate etc. etc. - then that parameter can be adjusted.

          But I'm guessing I'm flogging a dead horse here unfortunately Is there a respiratory specialist involved in your care still or has it been handed over to nursing?

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
          Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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            They did not know about that model and spent time searching for leaks and trying the older masks

            The specialist nurse today said one repeated alarm was an over volume alarm I was doing 700ml and the setting was 600ml

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              Hi Douglas ;

              Something seems very wrong from the beginning. I am no expert to say the least but I fail to see how your CO2 levels have not decreased, especially as you have managed to stay on it for so long a time.

              I don't know if any of the drugs you are talking have affected the breathing muscles, I know that tamazipan and others affect mine after a few days.

              Do try to get any settings and record them and make notes.

              Good to hear that you have plenty of TV channels.

              Love Terry
              TB once said that "The forum is still the best source for friendship and information."

              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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                700ml sounds right for your target weight/previous weight of 98kg, so your settings may need more tweaking.

                That alarm can be muted btw...

                Hope tonight is a good one!

                Love Ellie.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                  I'm sorry to hear them things aren't sorted yet. Round our way the machines are managed by respiratory physiotherapists.
                  I know they have tweaked hubbies machine so it doesn't alarm so often.
                  Hope they things go better tonight.

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                    i didnt know weight was a factor in the settings. Mick was over 16st , now 15 10 when he weighed in 2 wks ago at 5ft 6 /7 his nurse said not too worried about slight loss when she called tue

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                      Hi Douglas,

                      I hope things improve for you soon.

                      I should have thought the staff would be more knowledgeable, after all, Wythenshawe is supposed to be the specialist chest and breathing hospital in the area.
                      Dina

                      Trying to keep positive, but not always managing.

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                        I wish that Doug gets relief soon.

                        It is clear from the posts that only the 22 MND hospitals are capable of managing the symptoms associated with the disease. Once again this is an example of how scant the knowledge and experience of dealing with MND is in most health professionals. We need to change this but it will require money and training.

                        I don’t have a solution but I can see the problem.

                        Barry
                        I’m going to do this even if it kills me!

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                          Originally posted by Gillette View Post
                          Wythenshawe is supposed to be the specialist chest and breathing hospital in the area.
                          Yes I’m in the North West Ventilation Unit ward

                          Most of the men who have been in this side ward are fellow MND sufferers so most of the staff are great with it. What’s a bit worrying is how many are past alumni...

                          Anyway the CO2 is now 6.7

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                            That's a bit better, Douglas,

                            I would like to see below 5 in a few days.

                            What do you watch on TV?

                            Love Terry
                            TB once said that "The forum is still the best source for friendship and information."

                            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                            Comment


                              Watching Amazon Prime ( Good Omens ) and Netflix ( iZombie and Lucifer ) when I can

                              Yesterday my wife was given a whistle stop tour of the Nippy screen

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                                That's good to hear Douglas - the CO2 level is heading in the right direction.

                                Enjoy your TV !!

                                Love Ellie.
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                                Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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