peg

  1. 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...
  2. 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...
  3. 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...
  4. 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...
  5. 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-...
  6. 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...
  7. 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...
  8. ShiftKicker

    billybob's post re: EMST150

    Moved post from Visitor Messages- on behalf of billybob: Hello! At my last visit to the SLP therapist, my MEP average was 58. Discussion followed regarding a PEG and ventilator. After sharing with her I wanted to try everything else to forestall those devices, she gave me a gizmo called...
  9. B

    Transitioning

    For 3 years my wife has fought with everything she has to make ALS take things from her. Anything that could help make life easier was pushed to the side until it was the only option left. Her PWC sat as a dust collector for seven months, although for the last month, she was being pushed around...
  10. pdcraig

    What now?

    Just rambling. Today was 3 weeks since Ferd died. I've been trying to get the thank you cards done and have been in tears all weekend. I got the online stuff finished but the cards are still waiting, Not sure what it is about them that is so hard but... Getting his things together and doing the...
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