Announcement

Collapse
No announcement yet.

Living with a Ventilator

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Living with a Ventilator

    Just posted up this video on living with a ventilator - without using my ventilator !!

    https://youtu.be/V4lBzdNL-Rk

    #2
    Great video Calum and well done without your ventilator. It must have been very difficult to breathe and speak but you seemed to have it under control. NHS in the UK should not even challenge our right to this equipment.

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

    Comment


      #3
      Hi Calum ..very good video and glad ventilation has helped .. MND Northern Ireland launched a campaign a few months back asking MLA's to put their weight behind getting Ventilators for community .. it was called " Every Breath Counts " ..don't know where it is at to date but must make some enquires .. it certainly would be great to have ventilators out on community for those that require them ..
      Dvd

      IMG_20160802_215649.jpg

      Comment


        #4
        Another great video Calum;

        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


          #5
          Originally posted by Dvd View Post
          Hi Calum ..very good video and glad ventilation has helped .. MND Northern Ireland launched a campaign a few months back asking MLA's to put their weight behind getting Ventilators for community .. it was called " Every Breath Counts " ..don't know where it is at to date but must make some enquires .. it certainly would be great to have ventilators out on community for those that require them ..
          Dvd

          [ATTACH=CONFIG]715[/ATTACH]
          Hi Dvd - The ventilation postcode lottery appears to be a uk wide problem, even within Scotland there are wide regional variations. This is all very troubling particularly in light of the most recent research out of Australia showing that ventilation increases average life expectancy by 13 months - see link below:

          http://jnnp.bmj.com/content/early/20...np-2014-310055

          All the best

          Calum

          Comment


            #6
            For anybody looking for a comfortable non-invasive feeling mask, I've been wearing the FX Bella Gray for the last few weeks and I'm finding it great:

            https://mysleep.resmed.com/GB/en/Sle...a-Gray/p/61569

            Calum
            Last edited by Calum; 13 August 2016, 15:27.

            Comment


              #7
              Hi Calum
              I've been on overnight ventilation for nearly two months now and it has improved my life-no more headaches and feeling awful during the day. It's really bad that there's such variation in accessing ventilation. I would be really ill without it.

              Crystal x

              Comment


                #8
                Hiya,I am concerned that I
                I just can't get used to the ventilation masks(yes plural(!) as have nasal ,nose/ mouth ,complete facial one) I just dislike the feeling of suffocation that I get with the straps and face cover in general.
                Been told by my nippy nurse and palliative care nurse not to work myself up about it but I do have trouble breathing when I am put into my sling to be hoisted followed by when I first get into bed! I don't know what to do.......

                Comment


                  #9
                  Hi Missmuffett;

                  How long have you been trying to use a mask as most people find using one very hard. Maybe try for short periods during the day and try to build the time up for two hours. You can get different masks and (I think) Nasal pillows which don't cover your face.

                  You could also just use it when being hoisted or try some drug to make you less panicky but I think trying it for short periods during the day time and/or nasal pillows.

                  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


                    #10
                    Hi Miss M,

                    Try short periods of daytime use as Terry said, to get used to the feeling. Using BiPAP will make your life more comfortable.

                    Given you've tried nasal pillows, which have the least facial coverage, and still aren't comfortable wearing any, I wonder about taking a small dose of an anti-anxiety med before bed for a few nights? It's "mind over matter", which I know is easy for me to say Ask your nurse.

                    I wear a Total Face Mask at night, which is very comfy but I'm not claustrophobic.

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

                    Comment


                      #11
                      Originally posted by Ellie View Post
                      Hi Miss M,

                      Try short periods of daytime use as Terry said, to get used to the feeling. Using BiPAP will make your life more comfortable.

                      Given you've tried nasal pillows, which have the least facial coverage, and still aren't comfortable wearing any, I wonder about taking a small dose of an anti-anxiety med before bed for a few nights? It's "mind over matter", which I know is easy for me to say Ask your nurse.

                      I wear a Total Face Mask at night, which is very comfy but I'm not claustrophobic.

                      Ellie x.
                      Thanks for advice and my district nurse is sorting out something to help me relax a bit more and hopefully use the nippy machine to improve my breathing.
                      The longest I have worn my mask is 1 hour and 20 minutes but that was a while back.My main concern is that my arms and hands are now weakened and I won't in time be able to remove the mask when I want to.

                      Comment


                        #12
                        Yes I know that concern too! My arms & hands are next to useless so I need someone to put on my mask at night and remove it every morning.
                        I've no access to my sleeping beauty at night as he sought sanctuary in the spare room a while back!!!

                        All I know is the Nippy improves my life

                        Good luck Miss Muffett.

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

                        Comment


                          #13
                          I think 1 hr 20 mins is quite good and you could keep trying for an hour and build up a bit of trust.

                          Let us know what the nurse says.

                          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


                            #14
                            Good afternoon,

                            I see this is quite an old thread, but it is the obvious one for which I need to add my query.

                            I use a nippy breathing machine, more for sleep apnoea than for my motor neurone disease, but it is useful for that, of course, given the oxygen loss that occurs with sleep apnoea.

                            The mask that St Thomas's Hospital (the Lane Fox unit) have provided to me is giving me issues in that it seems to have opened up some sort of growth I have on the left-hand side of the bridge of my nose and marks the bridge of my nose during use - the mark fades during the day to be woken up again, as it were, as I use the mask during the next night.

                            Do folk here have a recommendation about a different sort of mask that does not have to rest on the bridge of my nose in order to make a good seal?
                            Warmly


                            Andy

                            ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
                            MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                            "Things turn out the best for people who make the best of the way things turn out"

                            Comment


                              #15
                              Hi Andy

                              I use a Nippy 3 overnight. The mask I use sits beneath the nostrils and doesn’t actually touch the front or sides of the nose. It’s the ResMed AirFit N30i

                              The packaging says you can see more at :

                              ResMed.com/Support/AirFitN30i
                              Dina

                              Trying to keep positive, but not always managing.

                              Comment

                              Working...
                              X