Peg is a Good Thing

[Tomswife]

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. It also makes it possible to keep PALS well hydrated, more so than if PALS had to drink water by mouth. The PEG makes administration of water safer, reducing the risk of aspiration.
We often read the clinical trial statistics on ALS medications that propose extending PALS life by a number of months. In this very individual case of my PALS, the PEG tube has extended his life over three months. I know this because I am his caregiver, and I know what is going on with his health every day. And those months have been enjoyed (even when bedridden) with family, conversation, listening to books, watching movies and more.
I encourage PALS to go ahead and have the tube placed, when advised. There are other threads on the forum about this topic. I posted a document that are the physician notes from PALS PEG tube procedure on the forum.

 

[Firefighter58]

I agree with Tom's wife, I got my tube 7 years ago and for the same reason as Tom, the client recommended it. I still take my meals in the normal way by mouth but the tube is great for taking foul tasting meds and for water to combat dehydration. I like many pals have trouble swallowing liquids.
Al

 

[simon13]

Thank you for your posts tomswife and firefighter58. My dad is having trouble with liquids and I was thinking maybe I need to revisit the conversation.

 

[Tomswife]

There is a thread titled
"Timing of feeding tube?"

Where PALS and CALS shared their thoughts and experiences.

Timing of feeding tube?

Hi. My husband Tom. Received his official diagnosis on August 16, 2022. Bulbar onset ALS. He is 69. When we had our first meeting with the team at Nypresby they pushed for feeding tube insert asap. (Lots of pushing) The reasoning was - do it now while you are still healthy and can tolerate...

www.alsforums.com

 

[Bestfriends14]

The tube put on much needed weight for my husband. Sadly, he passed away a month after getting it placed, but that was because he got covid a few months before. That was the beginning of the end for him.

 

[jeanG]

I had mine put in December 2022. The biggest thing for me was being able to take my meds easier. There is no way I could continue to swallow pills. It is so easy now! Also, I am unable to swallow liquids so it is huge for me to make sure I get enough water.

 

[Firefighter58]

For me the tube is an easy way to extend life and health.
Al

 

[lisa g]

I have never regretted having the feeding tube placed. I recently had it changed out to a mic-key button and couldn't be happier. I use Kate Farms for my nutrition and have maintained my weight even gained 10lbs. It definitely makes taking Relyvrio easier bypassing the nasty taste.

 

[oldgeek]

Thank you for this. I'm on a vent full time, have a trach, pacemaker, etc but for me the PEG was something I keep pushing off. I've had four docs on my team tell me to do it and I've finally got an appt scheduled but was about to cancel. Sounds like it's not a big deal and better to do it early. So I'll quit being a wimp and get it done. Thanks again for the push.

 

[Tomswife]

https://www.alsforums.com/community/attachments/peg-endoscopy-notes-google-docs-pdf.29811/

This is a link tp the physician notes from PALS Peg Procedure. New York Presbyterian.