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  • Users: Bob R
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  1. B

    What and when ?

    I'm almost two years into my nightmare, and every day I check a half dozen or so ALS websites to see what's new. And every day there is something new. Most of the new stuff falls under the heading of basic research. I'm not expecting to read that a cure has been found. That's not realistic...
  2. B

    Peg tube nutrition

    I have been using my peg tube for almost three months. I can't chew, so all my nutrition comes through the tube, I have been living exclusively on Jevity 1,5, along with many supplements and vitamins. My vital signs are very good. Is it desirable or even possible to live only on Jevity ...
  3. B

    Breathing questions

    I have bulbar onset ALS for close to 2 years. I'm pretty much confined to a hospital bed for 22 hours per day. I find myself sleeping 12 - 14 hours per day. When i sleep, I have no problem inhaling but exhaling seems to take twice as long, and seems to be labored, although not consciously so...
  4. B

    3 days into my new peg tube, OMG

    3 days ago I had my first peg tube inserted. The pain and discomfort is still substantial. Especially when I cough, which is frequently. Also, I have become much weaker throughout my body. Have reduced rang of motion, due to the pain of the tube, and have been having severe muscle spasms...
  5. B

    suction machine question

    I recently purchased a DeVibliss suction machine to help with controlling my mucus. It works well, but the tube has no tip. Both ends of the tube are for connection to something else. I called the company, but got nowhere. I want to be able to go down my throat a bit, What I did was to cut...
  6. B

    from time of diagnosis

    Diagnosed with MND on 6/2/15, I will be posting various thoughts/ rantings on this disease. We have all heard/ read that life expectancy is measured from time of diagnosis. Lucky for me, my doctor was on a 3 month vacation before my diagnosis, so that means I get an extra 3 months to live...
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