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    • #19113
      Anonymous
      Inactive

      Info in a technique used for pALS with Trach’s :

      Breathing Easy in Dallas – YouTube

       

      Knowledge is power. If you end up on a trach, this is what you want. Some of these people survive a decade or more with the proper care.

    • #19156
      Tom Hehir
      Participant

      Thanks John for sharing. I was diagnosed last Sept. By November my SVC was 51 and I was prescribed a bipap. I use it at night and a couple of hours in the afternoon. Shortly thereafter I was given a cough assist. My SVC is now in the 70s and my FVC is 100. I can lay flat without a problem. I went from having considerable breathing problems to minimal problems. I think all ALS patients should be prescribed a bipap when diagnosed to simply give your lung muscles a rest. Also the cough assist expands my lungs and clearing out the mucous improves my speech. This should become a standard of care.

      Thanks again John.

      Tom

      • #19388
        Duane
        Participant

        I agree with you.

    • #19376
      Marianne Opilla
      Participant

      I asked for my bipap after hearing a webinar.  Now I have asked for the cough assist.  Unfortunately I feel like I have to do my research and then ask for everything.  I do feel better after using the bipod at night.  I don’t know yet if my numbers are better.  I agree totally that the respiratory assistance should be ordered as soon as diagnosis is made, especially with bulbar symptoms.

    • #19387
      Duane
      Participant

      I have been using a cpap/bipap for many years. Recently I had loud leaks that kept me and spouse awake most of the night.  I adjusted the pressure down by 2 levels and now I am sleeping like a baby and no leaks, or noise.  I looked into options and methods on YouTube for adjusting it and it has worked very well.  The pressure was too high for some reason.  I have a Dreamstation.

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