Friday, May 23, 2025 – Day 283

Friday, May 23, 2025

Good morning, and happy Friday.

Tuesday night’s Season’s Sunflower Hour has already racked up over 400 views—an incredible number of people taking the time to listen to our ALS journey. I’m still blown away that we were chosen for this. It was a fun and meaningful show, even if it left me a little emotionally drained. Thank you to everyone who tuned in—it means more than you know.

If you missed it, here’s the link: 
www.youtube.com/live/KWi-…

I try to keep up with the latest in ALS research through websites like ALS News Today. They’ve got a range of forums—some technical, like clinical trial updates (where, for the record, 90% of them fail), and others that are more about day-to-day living. So far, I don’t qualify for any active trials, but I keep checking.

Yesterday, I came across a post about coping with ALS that mentioned a mental health survey on Psychology Today. It’s just 20 questions and gives you a “coping score” when you’re done. I took it—twice, to check my honesty, and came in at 91 out of 100, which landed me in the flourishing category (defined as 87–100). I answered honestly, I believe, both times, and yeah… I think I am flourishing. It was sunny yesterday, I need to take the survey on a cold, rainy day and see if that would change the score.

I owe a big part of my “flourishing” to all of you. You’ve helped me find the courage to live out loud with ALS, without shame or fear. You’ve supported me without smothering me, given me the freedom to try living normally—and occasionally fail—without letting me fail in the worst way. Falling! You’ve made life with this disease far more bearable than I ever imagined. I know this journey hurts you too. Thank you for not looking away.

If you’re curious about the survey, here’s the link: 
www.psychologytoday.com/us/tests/…

Dinner with the Balasis Last night we had dinner at a new Italian restaurant in Crystal Lake called Florios Italian. We went with our usual family members, Barb Mark, and a special visit from daughter Mia. She’s in town for a weekend wedding.

From the moment we walked in, the place had a warm and inviting feel. The lighting was low but just right, the table settings were formal and spacious, and the host greeted us with a genuine welcome. Our server, Joshua, had that rare combo of charisma and sincerity—you could tell he really enjoyed what he does.

The pace of the evening was relaxed (just how we like it), and we never felt rushed. We were there for over two hours—we were having a good time. There’s another Italian place in town that kicks you out after the two-hour mark. They actually tell you that upfront. I won’t be going there.

I ordered the ribeye and tried cutting it myself, which turned into my familiar ALS battle: the death grip. My fingers locked around the knife, and I had to pry them loose one by one. Barb, seated across from me, offered to cut my steak into bite-sized pieces—and unlike last week’s deep-dish pizza saga where I wrestled through stubborn pride, this time I said, “Yes, please.” I’m learning to accept help when I need it, and focus on what I can still do. The rest? I’ve got people. Thanks, Barb.

Bonus: steak and eggs for breakfast this morning—off to a good start on my daily 110g protein goal.

Make it a great Friday and Memorial Day weekend. Do something good with it. 
Love you guys! ❤️