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  • My husband really wasn't listening until he coughed often on coffee and actually choked on food. Unpleasant to say the least. Then he was ready to listen. He tried to get a feeding tube June July but his breathing has deteriorated significantly and he doesn't tolerate bipap due to claustrophobia. We were told there would be a high risk that he would require venting during the procedure(based on severe panic) so we decided to forego the procedure.
    Sorry about the diagnosis. You will learn a lot from this forum.
    My husband has ALS - has refused PEG, vent. We have a Bi-Pap but so far, he has refused to use it. I feel that it is his choice and I have to support what he wants.
    He has no use of arms or legs and difficulty swallowing. Uses Thick-It2 (more concentrated than Thick-It) in all fluids. His food has to be brought down to the same consistancy too.
    Symptoms started Oct. of 2009 with a slight limp...thought he stood oddly on a roof too long doing a roofing job. Today, no use of legs, arms, hands, weak torso(think ragdoll that can be extremely stiff at times), no voice, and difficulty swallowing. He's considered advanced stages but he doesn't tolerate bipap so no-go on that, no peg. He's 45 and still kickin'....he's getting one daughter off to college and eager to watch the younger daughter play HS varsity soccer this september/october.
    Hi, welcome! Sorry about the diagnosis. My husband has ALS and refuses PEG and vent as well. I don't post too often but feel free to pM me anytime.
    IM DOIN GREAT THANKS. I had a great weekend with my wife Maria. We watched a good movie Sat.night and i got to watch the whole nascar sprint cup race by myself with surround sound and then she brought me a big pizza from Costco and made it a good day
    Hey there Mark's Girl, How are you and your Mark doing lately. I hope you had a nice weekend down south from me. Iam in contact with a guy from Mission Viejo that will be coming here to see my truck for sale.
    Hi Steven,
    I find it difficult to pull myself away from this site....so much information to learn....
    Thanks for always sound so upbeat....you inspire us!
    You are very welcome. Igot a lot of info back in april when i joined and now have real good helpfull friends to chat with all over the country and beyond. This place kinda replaced facebook for me. I wish you and Mark the best.
    Hello, how are things going your way? Is mark the one with als? I got me a new blue jazzy select power wheelchair Friday and now ready to cruize around this coming week
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