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    Breathing

    You all know that I’ve been diligently breath stacking but it’s been getting to be more effort to keep where I was with it. So I emailed my OT last night. I had a reply this morning. She’s feeding my message back to the Salford team. She said that the physio has more to do with this. I hope that I can keep up my breath stacking for a bit longer but with an extremely dry mouth it’s very hard. Lynne xx
    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.

    #2
    Hiya Lynne K Hope you get it sorted.
    I keep seeing references to "breath stacking" but I don't know what it is - could you tell me how it works please.
    I am starting to notice more breathlessness. Not sure if that is the condition, or because I can't exercise like I used to.
    Cheers.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Still walking and talking, and wondering what the future will bring.

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      #3
      Money someone recommends NIV 💰💵💸🤑xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        WheelsOfSteel basically breath in a bit hold and bit more hold and bit more then slowly realise. Think you will find it on YouTube.
        Diagnosed May 2021 bulbar onset als.

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          #5
          Originally posted by WheelsOfSteel View Post
          Hiya Lynne K Hope you get it sorted.
          I keep seeing references to "breath stacking" but I don't know what it is - could you tell me how it works please.
          I am starting to notice more breathlessness. Not sure if that is the condition, or because I can't exercise like I used to.
          Cheers.
          Breath stacking: breath fully out, then breath in fully and hold it, sniff in as much as you can whilst holding in what you breathed in. Put your tongue on back of top teeth and blow out as slowly as you can manage. Count in your head. I’ve been getting 30s, 40s and 25s. But everyone counts at different rates. Good luck xx
          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.

          Comment


            #6
            WheelsOfSteel there are MNDA guides on breath stacking I believe. Also if you write breath stacking in the search box you'll see previous threads and links.👍🏻😉
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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              #7
              Lynne K Lynne, please don't think I'm being patronising: I honestly think you underestimate your lung function - I know how every little change affects the psyche, but you're doing great and long may that continue.

              IF, in the future, breath stacking as you're doing it gets too difficult, you don't have to give it up, but can continue breath stacking using an LVR bag (the Physio will know about this) so you can continue keeping your lungs in top condition, for as long as possible 👍👍 xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Originally posted by Ellie View Post
                Lynne K Lynne, please don't think I'm being patronising: I honestly think you underestimate your lung function - I know how every little change affects the psyche, but you're doing great and long may that continue.

                IF, in the future, breath stacking as you're doing it gets too difficult, you don't have to give it up, but can continue breath stacking using an LVR bag (the Physio will know about this) so you can continue keeping your lungs in top condition, for as long as possible 👍👍 xx
                thanks Ellie, as you know I’m extremely worried. I’ve been breath stacking dozens of times each day for a few months and built up to 40, but some times recently struggling to get to 30.

                But funnily enough I got 39 after a worryingly 25 today. I’m still doing breath stacking but with my very dry mouth it’s hard to blow out. I’ve cleaned my teeth 3 times so far today because this seems to make my mouth feel wetter.

                I’m going to Bury Hospice for 2pm reflexology. She thinks that I’m going to get onto the couch, but I’m not. I’m going to stay on my powered wheelchair and tilt it back for her xx
                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.

                Comment


                  #9
                  I’ve never really understood breath stacking. I take 1st breath in and I have no room for any more on top.
                  The only way I can work it is to take in a half breath then top it up. Don’t see the point
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                  Comment


                    #10
                    Originally posted by Rosemary6NT View Post
                    I take 1st breath in and I have no room for any more on top.
                    Fear not Rosemary, there are plenty of us in the same boat... I can barely breathe in or out, so use an LVR bag to do (what just about passes for) breath stacking.

                    The biggest benefit of breath stacking is in keeping the lungs clear of secretions, thus reducing the risk of infections, in those of us with a weak cough, by getting more air in and out of a greater part of the lungs than would otherwise happen. It dosen't stop the motor neurons dying.

                    If you want to know about breath stacking with an LVR bag in ALS, here's a video; if not, ignore it! xx









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

                    Comment


                      #11
                      Thanks for the tips folks - I will look it up.
                      In the meantime I can go back to my rifle training:
                      • Breath in
                      • Let half of it out, then stop.
                      • Squeeze trigger in the space between heartbeats.
                      • Let rest of breath out.
                      I can achieve a wonderful calm while plinking at targets.
                      Hi, I'm Eddie.
                      Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                      Still walking and talking, and wondering what the future will bring.

                      Comment

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