peg

  1. B

    New PEG

    Last Thursday I had a PEG or G-tube inserted. Procedure went well and it looks okay but very painful, especially when I move in certain ways. It was inserted because my breathing has become so compromised; therefore it will be dormant until needed. I underwent a "twilight" anesthesia but I...
  2. N

    PEG tube > now I can't control my bowels?!

    hello, I have had a feeding tube now for about a week. I am strictly on the formula diet (i haven't tried pureeing Foods yet) and I haven't been able to control my bowels,. Everyday, sometimes twice a day I'm having accidents. Is this how it is going to be from now on? I feel trapped now like I...
  3. B

    Diaphragm Pacer

    Hello all. I'm currently using non-invasive Trilogy and Cough Assist devices, and I'm scheduled for PEG surgery on August 9. At my PEG consult yeterday, the doctor asked me if I had heard of diaphragm pacing system that's sometimes considered as non-invasive devices become less effective. My...
  4. J

    Newbie with Rilutek

    yes, you read it right! its app 3,5 years after onset and 10 months after diagnose. my ALSFRS-R is 39, neuro count in on 29.6. he was angry with me after saying that i never used rilutek cause i didnt believed dx. all i got i have in my draw. now is 18th day of using rilutek. after 15 days i...
  5. J

    Difference in "laboratory research only" products and products for comercial use

    Difference in "laboratory research only" products and products for comercial use since i am "not eligible" even to live, i guess that I AM eligible to chose how to die and how to spend my money. trial is on: ibudilast as a add-on to rilutek, double-blind, blahblah... decided to do it my way...
  6. R

    What to do when PALS is choking?

    My wife has started choking more frequently — usually on liquids, but sometimes on grainy food. I don’t know what to do in theses cases. She continues to cough for a long time. We have used the cough assist with some success, but have not yet used the suction device. She gets a bit panicked and...
  7. B

    PEG (Feeding system)

    I have now been advised to have a PEG port placed in my stomach since my breathing has taken a turn for the worse. I can still eat and drink, but I was told my FVC was now down to 50% so it's time to do this procedure before my breathing becomes even more compromised. The procedure would be done...
  8. M

    Mom recently diagnosed

    Hello All, My name is Meaghan, and my mom Nancy was officially diagnosed with ALS in December by the Cleveland Clinic. We've had a scary few weeks, with her going into the hospital May 1 (trouble breathing), and coming out with a trach, Trilogy, and PEG tube (and all that comes with that-...
  9. L

    VA coverage for 24 hour care?

    Hi, everyone. This is such a wonderful community you all have built. I have learned so much already and am so grateful for this resource. My friend has very recently been diagnosed with ALS, bulbar onset. Diagnosis was only about 3 weeks ago, but things have been progressing rapidly as his...
  10. M

    Question and possible help for others

    Good afternoon, I have a specific question which I'm hoping you can help me with. I've read many posts, etc. and sometimes they are "in line" and then sometimes you get a variation from what the mods and senior members post here so hopefully this will help me. First, I do understand that many...
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