1. Duker52

    Feeding tube tomorrow

    Well, the day is fast approaching -- tomorrow I get my feeding tube. I have Bulbar Onset, but can still swallow. My spouse, neurologist, and friends have all said to get it before you need it. So I am bowing to their advice and getting it out of the way. Would appreciate any words of wisdom...
  2. S

    Feeling helpless

    Hello, I've been following this forum for quite some time but have never had the time to share. my husband was diagnosed with ftd 2014 ALS june 2015. As of this morning he refuses any help with breathing issues..no oxygen no BiPAP no doctor visits no showering it's been almost 5 days again...
  3. W

    Hello from Colorado!

    Hi everybody! I haven't posted too much but I've come to this website many times over the years whenever I wanted to see how other people have dealt with the same issues we've faced. I'm a CALS for a (as of Monday) 45 year-old man who was diagnosed right around this time of year 2011. This...
  4. J

    New PEG Question

    Hi, My husband just had his tube placed on Monday so this is new to us. Is it common for contents to stay in the tube? He seems to think that in hospital when they gave him a feeding the tube was clear. But now that we're home and I give him a feeding the tube is not empty afterward. Is...
  5. M

    Is my mom giving up?

    This is my first post. My mom was diagnosed with ALS in March of 2015. It is difficult for me to see her progress as we live 600 miles apart. She told me before I got there to be prepared as she had really declined. But when I saw her I did not think her "decline" was as bad as she made it...
  6. F

    Steps to take to end my life sooner

    According to my Neurologist, I am progressing fast. I was officially diagnosed with a second opinion on June 8th. I turn 65 in November, have a wonderful husband, two adult children four grandchildren, and excellent friends. I have had a good life; however, I do not want to continue living this...
  7. S

    Does CO2 Buildup Cause Confusion?

    A few days ago, Tom told me he woke up and didn't know where he was. I didn't pay much attention because he has done this in the past...long before ALS. But then Friday night he woke me up and asked me if I heard music. I did not and my hearing is much better than his. Yesterday morning he tried...
  8. J

    Feeding Tube

    The past week has been rough he seems to have declined. His speech is almost gone . I had to translate for him at the doctor on Monday. Luckily his eye gaze computer should be here next week. Since last week he's started sleeping so much more during the day. Better than he sleeps at night...
  9. M

    Feeding tube formulas

    What is the best formulas to use in your peg?
  10. S

    Mixed Signals

    I am getting some mixed signals from Tom. He has never been one to express his feelings so he wouldn't necessarily say what he feels. We have in the past discussed that when he feels like it is all too much and he is ready to go, he can stop with the feeding tube and allow nature to take it's...