1. C

    Second guessing myself

    So here's the lowdown. Last year my husband bought me airline tickets to see a dear friend of mine who has a home in Ireland and will be there on July 12. He was independently able to transfer at the time he bought the tickets. By April of this year, it was clear that he would need more...
  2. S

    Any Trials for those with Feeding Tubes In USA

    Just curious if there are such trials, thanks!
  3. P

    Pain management while using a feeding tube

    Previously I took Ibuprofen when needed. Now I can not swallow the Ibuprofen... just got a tube on the 14th. We are learning to use it. I have back pain and shoulder pain, severe and exhausting... no recent injuries. Several injuries years ago. Lived with these pains for years, but now I am...
  4. G

    PEG tube holder

    Hi all, my first forum post... just joined today. I had a PEG tube installed while undergoing throat cancer treatment. No ALS, but this appears to be the most vigorous PEG tube forum I found. Anyway, after the initial surgical pain had subsided (about 1.5 weeks), I was bothered by the weight...
  5. tripete

    Pain and ALS

    The experts and the different websites that we read will all tell us that the malfunctioning motor neurons and subsequent muscle wasting is not painful. And while technically this is true it is also misleading. As in my experience ALS is very painful. Physically - We go through excruciating...
  6. C

    Stopping eating and drinking

    I've had ALS for a little over two years, am about to move in with parents, who are elderly, because it's getting harder and harder to live on my own. I can still do things for myself, tho wheelchair bound, but am also losing strength in my dominant hand. (Absolutely no bulbar symptoms I've...
  7. F

    My journey, more questions. :)

    Hi everyone and Happy Memorial Day. As time goes on, it seems more questions come up. My neurologist retired so I'm in between providers. So, far, what has changed the most is my right hand/arm. It's getting harder to turn the ignition key, can't hold the coffee pot really anything that...
  8. S

    Not Enough Calories

    Tom had a PEG tube put in 3 weeks ago. The dietician and the speech therapist both encouraged him to take as much by mouth as possible. The dietician wants him to have 2000 calories a day, half from regular meals and half from Ensure, either by mouth or by tube. He started out well, drinking 3...
  9. Michellesews

    Hospice...how to know when it's time to call?

    My PALS (husband) can no longer stand at all. He does not want a feeding tube or trach but uses a Trilogy. He says he's afraid of choking to death or starving to death. He can still eat but must do so very slowly. I don't want to jump the gun...but when is a good time to call in Hospice...
  10. F

    Feeding Tube Formulas More Susceptible to Clogging?

    Hi All! I am new here and am hoping that you can all help me out! I am a laboratory researcher for a medical device company. We recently started working on a technology for feeding tubes that we are going to test to see if it helps reduce the incidence of clogging. To test it, I need to find...