May 14, 2023

Journal Entry by Paul Curtis — May 14, 2023

A lot has happened since our last post. First the hike…

I went on our church’s annual men’s hike. Every year we backpack for 25-30 miles over 4 days. We live off of whatever we have on our backs. This was my 7th year doing the hike. It’s an amazing week of not only hiking over beautiful terrain, it’s four days of deep sharing and fellowship with men who have become like family to me. The fellowship was as great as ever this year. Unfortunately my hiking abilities were not. Partway through the second day, my body gave out. My muscles and stamina are not what they used to be. Before you shake your finger at me saying, “Why would a guy with ALS try to backpack 25-30 miles???”, you should know that this has been an important part of my spiritual renewal and conditioning over the last several years. I get more out of it than you can imagine. Based on our practice hikes leading up to the trip, I felt confident I could at least make it half way. We have a team that meets us at the halfway point and camps with us. They feed us that night and morning and have their own activities, but they drive in and out. Well, I couldn’t quite make it halfway on my own, but some of the guys on my team helped carry some of my gear for me. One guy carried my whole pack along with his own pack up a particularly long steep part of the trail (Thanks Joel!). Once I got to the halfway point, I stayed there and that team welcomed me as one of their own. I could go on and on about how good this hike is for the men in our church. Overall it was a terrific time, despite my not being able to complete the hike.

The other big news is that I had the PEG feeding tube installed on May 1. The muscle they punched through to get to my stomach hurt quite a bit. It hurt to sit, stand, cough, laugh, etc. I'm not 100% recovered from that, but I am already using the PEG for my nutrition. My stomach can only take so much volume at this point, but I am gradually increasing my calories. No weight gain yet, but we are expecting that to change in the next month or two.

On June 12-13 we’ll have our fourth appointment with Dr. Sharlin in Missouri. They will be taking tests again to see where all of my levels are after having been on the program 4-5 months. That will give us an indication on what is working and what needs adjustment.

Thanks for being on this journey with us!