1. O

    Why am I so against a PEG?

    My health team has all said I need a PEG. My bulbar problems have led to paralyzed diaphragm so I'm trach'd and on a vent almost full time. I've lost a bunch of weight and that has slowed but I am still losing weight and can only manage one meal a day which takes over an hour. I finally...
  2. C

    Peg tube question

    I got tube a week ago. I like to drink iced coffee by mouth, but then I see coffee backing up in my tube. Any solutions to this? Thanks
  3. Tomswife

    Peg is a Good Thing

    After diagnosis, PALS often has to decide when and if to have a feeding tube placed. Tom had his PEG tube placed early (before needed) as advised by the clinic. We are both so very grateful he made this decision. Having a PEG makes the administration of medication very easy and efficient...
  4. Tomswife


    I am attaching the notes from PALS Peg endoscopy. This way you can learn how it is done.
  5. M

    RIG vs. PEG

    I'm so confused. The clinic director's order just says, "feeding tube." I want RIG. For some reason, I've been told to drive 90 min each way, to get a CT scan. I'm concerned that this means I'm queued up for PEG. Also, I don't understand why, if I have to get CT, I can't get it locally and...
  6. M

    PEG procedure questions

    I called to schedule my PEG today. They said they want to do the CT themselves (90 min drive each way). Then they want to have me open my mouth and say Aahh so they can see how open my airway is (or isn't), and based on what they see they will score me (mallampati), and that plus my "history"...
  7. Tomswife

    Peg tube placement - inside out.

    Tom is scheduled for his PEG tube November 23. Because he has bulbar weakness he cannot recline more than 60 degrees. Therefore the typical way the tube is placed "outside in " will not be used. His procedure will be done at the Center for Digestive Disease. He will be placed under general...
  8. I

    Very Fast Progression

    I was originally diagnosed with progressive bulbar palsy in January of 2018. At that time we were told that there was an excellent possibility of having several years before things really became troublesome. In April 2018 I had a PEG put in and speaking was no longer a possibility. My legs...
  9. I

    Facial muscles

    I was diagnosed with progressive Bulbar Palsy I. January 2018. Although I could no longer swallow or speak by April of 2018, a PEG. helped and things were ok until Christmas of 2018. My limbs are weakening but I’m making the best of that. My biggest worry is my eyes. Even after sleeping well...
  10. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...