- This topic has 4 replies, 3 voices, and was last updated 3 months, 3 weeks ago by
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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.
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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
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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.
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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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