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. jethro

    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. jethro

    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-...
    • meaghanb13
    • Thread
    • advice als bed bedpan breathing clinic diagnose diagnosed hoyer peg trach trilogy
    • Replies: 7
    • Forum: Newly diagnosed
  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...
    • Libbyc
    • Thread
    • advice als bulbar bulbar onset caregiving diagnosed diagnosis friend healing hours nurses onset peg questions respite symptoms vent
    • Replies: 12
    • Forum: Military veterans and the VA
  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...
    • MANinCT
    • Thread
    • advice als arm back clinic early emg fingers go away kids lead mistake peg problem questions story symptom symptoms test testing tests twitch weakness worried wrong
    • Replies: 12
    • Forum: Could this be ALS?
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