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    #31
    Hi Ellie
    It started about 3 months ago, but seems to be happening more now. Not really breathless.I think it is just the chest but also my back. I get no warning it just happens. Hard to explain really, sometimes it happens when I lay down for a nap. Maybe I am over worrying.
    Thanks,
    Sheila x

    Comment


      #32
      Sheila,

      It could well be reflux, given that you've a burning/hot feeling which mostly happens lying down.

      Because our tummy and chest musles weaken, reflux often rears its ugly head and spams, heightened reflexes - oh, the joys!!

      Hope those meds work for you.

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

      Comment


        #33
        Thank you Ellie, I think you are right. The doctor gave me omeprazole to take. And I can dissolve it in water. Hope it helps.
        Love Sheila

        Comment


          #34
          I've been prescribed Omeprazole before MND as the Naproxen an anti-inflammatory drug that I'd been on for years wrecked the lining of my stomach especially the eroded top of it. But I didn't take the Omeprazole because it can interfere with the uptake of calcium. And it can interfere with your uptake of Rilozone. So I take care of what and when I eat instead of the pills and that works for me most of the time. I avoid eating before bedtime and always avoid too much fat. I'm caught out sometimes though and loose most of a night's sleep because of reflux, heart burn and feeling sickly. I miss Naproxen though. It's a great pain killer for some conditions. Lynne
          Last edited by Lynne K; 12 November 2019, 16:26.
          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.

          Comment


            #35
            Thank you Lynne, that is good advice as Well. It is hard to find a happy medium with all our problems. My husband takes naproxen for pain, he said it is very good.
            Sheila

            Comment


              #36
              Hi Dina

              Originally posted by Gillette View Post
              The Nippy is used when your chest muscles have lost some of their strength and your lungs are no longer able to expel enough carbon dioxide
              That is quite right but actually in my case as I am practising for when my lungs do not work properly - at the moment, the diagnosis is sleep apnoea found when my neurologist was wanting a base line test on my breathing and oxygen levels overnight.

              I am increasingly finding that sleep apnoea is very common and it may be that the oxygen deprivation arising from it may be 1 of the reasons why the size of brain is thought to be smaller than it ought to be.
              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


                #37
                Hi Andy

                Is sleep apnoea a symptom of MND? I don’t know. I know that weakness of the muscles for breathing is, which was why I mentioned it.
                Dina

                Trying to keep positive, but not always managing.

                Comment


                  #38
                  Andy,

                  Do St Thomas's resp team give you full Pulmonary Function Tests (PFTs) too or, at least, does someone regularly monitor your PFTs and keep an eye on your FVC/SVC, MIP, MEP etc? (I think I asked you before, sorry)

                  It's just I wonder if you do breath stacking exercises or perhaps your FVC is good, so they aren't necessary?

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

                  Comment


                    #39
                    Hi Dina

                    Originally posted by Gillette View Post
                    Is sleep apnoea a symptom of MND?
                    As far as I know not - this was picked up for me when my neurologist wanted a based test of how my breathing was so that subsequent tests which show when it was deteriorating.
                    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


                      #40
                      Good afternoon Ellie

                      Originally posted by Ellie View Post
                      Do St Thomas's resp team give you full Pulmonary Function Tests (PFTs) too or, at least, does someone regularly monitor your PFTs and keep an eye on your FVC/SVC, MIP, MEP etc?
                      As I have just said to Dina I got my Nippy when having a base line test and sleep apnoea was diagnosed.

                      As to the other alphabet soup. I am afraid I do not recognise any of the other items you mentioned, but they do give me a full breath test when I go in - at least they have on the two occasions so far, the next one being in January 2020
                      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


                        #41
                        Hi Andy,

                        If you want to know how your breathing is doing, the “alphabet soup” (nice one ) of data is how you track it.

                        As our diaphragm and intercostal muscles weaken, it affects how much we can breathe in and out, as well as how much we can fill our lungs - and those FVC, MIP & MEP tests show how we’re doing in this regard. If you want to know your figures after the January tests, you can ask for the results or even take a photo/scan of the results page.

                        The data is also an early warning for NIV / BiPAP use, for those wishing to use it.

                        Although MND doesn’t directly affect our lung health, a side effect of not being able to cough effectively, take deep breaths and have a poor swallow which may cause aspiration episodes is that we can’t always clear (bacteria laden) mucus and often get (recurrent) chest infections or pneumonia. This is where Cough Assist machines can be beneficial in helping lung health, as well as providing physical relief and comfort to the user.

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

                        Comment


                          #42
                          Hi Ellie

                          Okay - Thanks again

                          So we have……

                          Pulmonary function tests (PFTs)
                          Forced vital capacity, slow vital capacity, or inspiratory vital capacity (FVC/SVC)
                          Maximal inspiratory pressure (MIP)
                          Maximal expiratory pressure (MEP)
                          et cetera (etc)

                          In case you have not noticed one of the things that I get ratty about is the exclusive / excluding nature of acronyms.

                          As the next time I see the consultant I have a St Thomas's, will be in January 2020 I just asked for the latest numbers now
                          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


                            #43
                            Originally posted by nunhead_man View Post
                            In case you have not noticed one of the things that I get ratty about is the exclusive / excluding nature of acronyms.
                            Yeah Andy, and I use eye gaze to type, hence the acronyms....
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #44
                              Good evening

                              Yes, sorry Ellie I know you communicating this way - I think you are a wonder to keep going in the way that you are.

                              My alternative mask arrived in the post this morning so I will try it this evening and see how my nose fares!
                              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


                                #45
                                How's the macho nose doing with the new mask Andy?

                                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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