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rose
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  • Hi Diane,
    I often wondered how you been. So nice to hear an update from you. Hope you stick around a little.
    Dee
    Hi Diane, I can't find the posts you wrote regarding granulation and how to avoid it. I've had my peg for bout a month and it's getting irritated. Please help. I'd Akron the adult Gtube profile but that's a public FB group and I won't comment there due to lack of privacy. Thank you Diane!
    I posted a message on the forum, but I understand your the go to girl for answers. I see you make your own food for your feelings, very interesting. Just what can you and cannot put in the tube. Can you put a milk shake in, how about soda, or to many bubbles? Also, I have bulbar, and my bottom lip hangs down very badly and it is so embarrassing. I have a weeding the 17th, my step son is getting married, you know any ways to keep this lip up? You have such good ideas, thought I would ask you.
    As I was reading, I came across one of your older post that made me smile ear to ear. You make a reference to a book I also grew up with and now use with my own kids...feed me I'm yours...pouty baby pic on cover, happy-smily-food-all-over-baby-face on back of book. So cool!
    Just stopped in to see what's new! Lots of babies in your life....
    Love the shed!
    Hi Rose~~~ How is my "go to girl for answers???" Today, after searching about whether anyone had recognized that Michael Schwartz had died of ALS, I came upon a VERY old post of yours. Did you ever purchase Tales from the Bed or Losing my Voice. I had a thought that perhaps the ALS clinic where my Pals attends in Salisbury, could purchase those books as a lending library. This might inspire and be helpful to PALS and CALS. Did you find those books helpful???
    Hope this post finds you well.
    G.
    Always love your reality based facts and advice. You are my HERO!!!
    Kim, my daughter is doing fine after 2 yrs of her alternative treatment for cancer. The American med Association has now announced this new alternative as their own idea when Robert Dowling, a researcher, did so in 1996. It involves building up the immune system and starving the cancer instead of killing with chemo and doing radical surgeries..... enough for now. Stay strong and know you and others are not alone.... we'll meet again with AL and many others when this life is over! Hang in there!
    Hi Rose...had trouble getting password to work...even a new one...but now are back in... was a long time before I even wanted to be in.. Hope you are fine as can be! Rick is having some bulbar symptoms now as progression slowly happens... he coughs, sneezes, and blows food out from where it shouldn't go, and his voice is very bass.... He has weak legs but still walks, has strong arm and cough muscles, but diaphragm muscles way low.... He had aspiration pneumonia once. The VA still declares he doesn't have ALS......because he hasn't died yet!..after 5 yrs.......go to post 2
    Thanks, Rose. I do have saliva, but only at the front of my mouth. the back or my mouth and tongue feel extremely dry. It's like the saliva I have is trying to compensate for what's missing.
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