Wednesday, September 3, 2025 – Day 386

Wednesday, September 3, 2025

Good morning, new friends, old friends, and friends forever.

Yesterday I saw my pulmonologist, Dr. Shah, for what may well be my final visit. We talked through the remaining treatment options, most of which I’ve already received. The one thing still pending is the humidifier that was ordered a month ago to help with my dry mouth at night. Dr. Shah said he’d resubmit the order in hopes of moving it along. Whether that works or not, I suppose time will tell. Thankfully, the humidifier is for comfort rather than a major health issue—though I realize now I never asked him that outright. I trust he would’ve told me if there were bigger concerns.

So, once the humidifier arrives, I’ll be fully set up: noninvasive breathing machine, cough assist, and no oxygen required—since my lungs themselves are healthy. The real culprit is my diaphragm, which we’ve already addressed. That means I don’t need to feel guilty about the occasional cigar…my biggest challenge there is simply having the strength to draw the smoke. A pretty small problem in the grand scheme of things.

We also touched briefly on tracheotomy. That path has already been decided…against it…this would change life completely, require full-time medical care, and severely limit my quality of life. I’d rather keep walking or wheeling along this road the way I am now. For perspective, my lung function is still at 70% after a full year with ALS, so I’m not losing sleep over it.

After the appointment, I met a big group of my high school friends for lunch in Evanston. There were 13 of us. Most had a good commute to get there—30, 45 minutes or more. Sure, nearly everyone is retired now (Carl and Paul are still holding out), but they didn’t have to rearrange their day for me and meet based on my schedule. They chose to. That humbles me every time.

This was probably the sixth time we’ve gathered since my diagnosis, and each time there’s been a strong showing. It floors me, really. For two-three decades we were buried in raising kids, careers, and life’s distractions. Yet the bond we forged 50 years ago has proven unshakable. It’s so great to hear all the laughter that is heard from one side of the table to the other…and they are deep genuine laughs. What a spirited group to be around. The way you’ve all shown up for me…again and again…goes beyond friendship. It’s love.❤️

I don’t take that for granted. I’m deeply, sincerely grateful for each of you. You remind me, in the middle of this ALS journey, how rich my life is because of the people who walk it with me. That kind of gift leaves me humbled.

Today is a golf day and a day to raise awareness and $$ for ALS. We are headed to Cog Hill in Lemont for the ALS Classic. We have some rain in the forecast…but it’s going to be a fun day filled with friends and excitement on the course. I’m sure to have stories for tomorrow.

Have a great Wednesday.

Love you guys!❤️