April 8, 2023

Journal Entry by Paul Curtis — April 8, 2023

I have been on the revised treatment plan for a month and a half. My voice/speech has good days and bad days, but overall about the same as a month ago. That's not bad as we are focused on putting out the forest fire right now. Planting new trees (motor neurons) comes later.

The biggest struggle I've had has been keeping my weight up, which is frustrating since I spend so much of my time planning, preparing, and consuming food. There are two main factors contributing to my difficulty in keeping and gaining weight.

Eating is a real chore. It's difficult for me to swallow, so things like meat and tougher vegetables take a LONG time to eat. Carisa and Daniel are done with dinner when my plate is about half empty. Blending up food in smoothies or soups helps, but I still don't get in all of the calories I need.
I burn more calories than the average person when I'm at rest. People with ALS have twitching muscles (fasciculations.) Mine are mostly in my abdomen and legs. I hardly notice them, really, but they are twitching all day long and they burn calories. So I need more calories every day just to maintain weight and a lot more to gain weight. Carisa doesn't think that's fair!

According to the statistics, the weight gain/loss of an ALS patient is a stronger indication of longevity than any other factor. And according to Dr. Sharlin, I should be able to strengthen and gain muscle if I have the right amount of calories, protein, fat, etc. That's hopeful, because most traditional doctors will tell you that ALS patients can't gain muscle. But burning more calories than I eat is causing me to lose fat and muscle rather than gain it.

After lots of prayer and discussion and research, we've decided to have a PEG tube installed. That is a small tube that goes through the wall of my stomach allowing me to bypass my throat to get food into my stomach. Both of my doctors mentioned a PEG early on. I was against it because it felt like a step backwards. But we are seeing it more accurately as a tool toward health and healing. There are high calorie nutritional formulas that should help me get the calories and nutrition I need. I will still be able to eat by mouth, but it will be much less stressful because I'll just eat what I want and in the quantities I'm comfortable with. The rest of my nutrition can be through the PEG.

Another benefit of the PEG will be hydration. Ironically, water is even trickier for me to swallow than dense food. It's harder for my throat to control and can lead to choking. With the PEG, hydration is much easier. Oh, and have I told you that I currently have to swallow 15 pills and 16 ounces of a medicine every day?!?! Most of that can be given through the PEG. I am scheduled to have the procedure on May 1.

Other than that, we are in good spirits. I am planning on going on our church's annual Men's Hike, a 30ish mile 4 day backpacking trip at the end of this month. I have one more practice hike to go on before I officially decide. But as of now it's looking good. Thanks for checking in, and we appreciate your prayers!