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    My Mom is finally at peace

    My mom passed away on December 21st. She was going on day 13 of no tube feedings. I haven't been able to come back to the forum for a while, and I apologize for that. I guess I've been trying to make sense of the last 4 difficult months of her life, and I'm still as confused as ever. She...
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    I don't know what to do any more

    Hi All, Don't really know where to begin, so I'll just jump right in I guess. Some of you know my situation from my earlier posts but I haven't been that vocal recently because I'm too tired and overwhelmed. My mom (87 and diagnosed with bulbar onset almost 2 years ago, had symptoms at least 3...
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    scopalamine patch

    Does anyone have experience with the scopalamine patch to help dry up secretions? My mom's nurse is suggesting one because of her phlegm. I have heard that it may cause excess saliva - which would certainly be an issue because of her swallowing being bad. She is bulbar-onset. Thanks Trina
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    Peg tube madness

    Hi All, Today I had to take my 87 year old mom - bulbar onset - to the hospital's endoscopy unit, she had to change into a gown and be prepped as if she were having a surgical procedure, all for the gastro to come out and change the valve on the end of her tube. That's all I wanted, was to...
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    Checking on NeedCourage

    Just wanted to check in with you and see how you and your husband are doing. I'm not sure if you meant to turn off your visitor messages - if you did I apologize. Please send me a visitor message if you want to. Trina
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    visitor message?

    I went to someone's profile page to send them a visitor message - and there was no box there for visitor messages. I know I sent this person a message a while back. This is the first time this has happened. Any ideas?
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    Concussions and als

    There is an article in today's pgh post-gazette about a 32 year old former college football player who is suing the NCAA - asserting that he has football-induced ALS. Sorry I don't know how to post a link.
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    Trilogy vs. Avaps?

    I read on this forum that a lot of pals prefer the trilogy machine. My mom's pulmonologist has recommended and AVAPs (?) machine. Does anyone have any information about this? Right now I am having an awful time getting her insurance to approve her for one. She had a daytime sleep study and a...
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    Need help with valve on tube

    Hi all, My mom has had her peg since Jan 2012, absolutely no problems from the beginning. I don't know how to describe the opening (where syringe goes) except to say there is one main opening, and then one tiny opening off to the side that we don't use. The only time I even open the small...
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    Can someone please ban this new guy?

    I haven't even checked in that much lately because of a new member who is in everyone's face constantly. Why is he on this forum if he doesn't agree with anyone? Why is he so aggressive? I find his attitude very tiresome. I am on this forum to commiserate with others and learn things to...