Saturday, May 31, 2025
Good morning.â¨Itâs a beautiful sunrise over Lake Michigan this morning. Weâre at Illinois Beach State Park for an open house later today. I havenât been here in about 40 years, and itâs strangeâbut also kind of greatâto be back. The state has made a lot of changes, starting with the entrance. What used to be a straight shot into the park is now a long, curving road to the lake.
Friday, May 30, 2025
Good morning â weâve made it to Friday! Todayâs topic⌠loose lips.â¨Yes, literally and figuratively. As you know, ALS comes with a parade of symptoms, each one waiting its turn to mess with your daily routine. Iâve shared most of them with you along this wild ride, and today, weâre adding more to the scrapbook. Each morning starts the same: fire up the coffee maker, take my pills (do they work?
Thursday, May 29, 2025
Good morning everybody!! I know sleep issues arenât exactly headline news, but they are front and center again. Around 2:00 a.m. last night, my cabbage brain decides itâs time to get to work. Thatâs when it starts sorting through every open tab in my headâworries, memories, to-do lists. It plays out like a pinball game, bouncing from one thought to the next until the machine finally hits tilt. At that point, sleep is done for the night, and all I can do is lie there in the dark and wait for the new day to beginâŚand it has.
Wednesday, May 28, 2025
Good morning! I have no idea who reads this blog or how many people tune in each dayâand thatâs by design. I never wanted to chase view counts. I just wanted a place to share this journeyâour ALS journeyâwith family, friends, and curious onlookers who might be walking their own path or simply want to understand ours a little better. Going back to May 20, when we appeared on Seasonâs Sunflower Hourâme, Cindy, Nicole, and Alex.
Tuesday, May 27, 2025
Good morning everybody, and welcome to a new week. Yesterday was a laid-back dayâfor me, anyway. We went to the Memorial Day parade in the morning. The parade kicked off at 11:00, and we left the house at 10:00 to make sure we had easy, convenient parking. We brought the power wheelchair to make things easier on the mobility front. As it turned out, parking was easyâwe were the first ones there.
Monday, May 26, 2025
Good morning. Happy Memorial Day! Donât forget the veterans who gave everything to protect our freedoms. If youâve got a moment today, take it to honor them. Weâll be heading to the parade in Crystal Lakeâitâs become a meaningful part of the day for us. Yesterday was one of those golden family days. We celebrated Alex and Nicole with the perfect family only coupleâs shower, hosted by Kim and Aras. Cindy and I were right there in the mix.
Sunday, May 25, 2025
Good morning! I want to circle back to Seasonâs Sunflower Hour from Tuesday. A big thank you to Nicole (Nikki) and Alex for making the trip to Crystal Lake to be part of the show. You both couldâve joined remotely and skipped the hassle of travelingâbut you didnât. You immediately said, âWeâll be there,â and reshuffled your work and travel schedules to sit beside us. Well⌠almost beside usâwe had to be in separate rooms during the broadcast!
Saturday, May 24, 2025
Good morning sibs, kiddos, grandkiddos, friends, and curious mindsâ Our home continues to evolve. We could probably use a storage unit just to house all the adaptive gear that keeps showing up. Although letâs be honestâif it were offsite, weâd never actually go get the stuff when we need it so weâll just put household stuff in storage to make room. Yesterdayâs new arrival: a stairlift. Going up and down the stairs several times a day has become a real challenge, and my PT strongly suggested I cut back on the stair hikes.
Friday, May 23, 2025
Good morning, and happy Friday. Tuesday nightâs Seasonâs Sunflower Hour has already racked up over 400 viewsâan incredible number of people taking the time to listen to our ALS journey. Iâm 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 inâit means more than you know. If you missed it, hereâs the link: www.
Thursday, May 22, 2025
Good morning! My day starts the same way it has for years: come downstairs, brew the first cup of coffee, and take my pills while itâs perking. Simple routine, right? Not so much these days. Lately, dropping pills has become part of the ritual. And let me tell you, once a pill hits the floor, it bounces like my shots on a pool table. You never know where itâll land.
Wednesday, May 21, 2025
Good morningâand thank you, everyone for last night. My phone blew up with messages yesterday. Over 70 text messages poured in, and I saved them all to read this morning. Fifteen seconds in, the emotions hit. Hard. It may take me a while to get through the texts and respond, but please know: your words, your supportâthey mean the world to us. If you missed last nightâs Seasonâs Sunflower Hour featuring our family, you can still watch it here (and yes, itâll live forever on YouTubeâjust like a bad haircut): Watch the replay
Tuesday, May 20, 2025
đŁ LIVE EVENT ANNOUNCEMENT đť Seasonâs Sunflower Hour â Special ALS Episode. TODAY!!! Weâve got something real to share. đ Tuesday, May 20th - thatâs todayâ¨đ 7:00 PM CSTâ¨đ LIVE on YouTube Join me and the family for a candid conversation about life with ALS â or as weâve come to call it, that shitty disease. Weâll talk about the hard stuff, the funny moments, and even those questions people havenât had the nerve to ask out loud.
Tuesday, May 20, 2025
đŁ LIVE EVENT ANNOUNCEMENT đť Seasonâs Sunflower Hour â Special ALS Episode. TODAY!!! Weâve got something real to share. đ Tuesday, May 20th - thatâs todayâ¨đ 7:00 PM CSTâ¨đ LIVE on YouTube Join me and the family for a candid conversation about life with ALS â or as weâve come to call it, that shitty disease. Weâll talk about the hard stuff, the funny moments, and even those questions people havenât had the nerve to ask out loud.
Monday, May 19, 2025
đŁ LIVE EVENT ANNOUNCEMENT đť Seasonâs Sunflower Hour â Special ALS Episode. In just 1 day, weâve got something real to share. đ Tuesday, May 20thâ¨đ 7:00 PM CSTâ¨đ LIVE on YouTube Join me and the family for a candid conversation about life with ALS â or as weâve come to call it, that shitty disease. Weâll talk about the hard stuff, the funny moments, and even those questions people havenât had the nerve to ask out loud.
Sunday, May 18, 2025
đŁ LIVE EVENT ANNOUNCEMENT đť Seasonâs Sunflower Hour â Special ALS Episode. In just 2 days, weâve got something real to share. đ Tuesday, May 20thâ¨đ 7:00 PM CSTâ¨đ LIVE on YouTube Join me and the family for a candid conversation about life with ALS â or as weâve come to call it, that shitty disease.Weâll talk about the hard stuff, the funny moments, and even those questions people havenât had the nerve to ask out loud.
Saturday, May 17, 2025
Good Morning, everyone! đŁ LIVE EVENT ANNOUNCEMENT đť Seasonâs Sunflower Hour â Special ALS Episode. In just 3 days, weâve got something real to share. đ Tuesday, May 20thâ¨đ 7:00 PM CSTâ¨đ LIVE on YouTube Join me and the family for a candid conversation about life with ALS â or as weâve come to call it, that shitty disease.Weâll talk about the hard stuff, the funny moments, and even those questions people havenât had the nerve to ask out loud.
Friday, May 16, 2025
Good Morning, itâs FRIDAY!!! đŁ LIVE EVENT ANNOUNCEMENT đť Seasonâs Sunflower Hour â Special ALS Episode. In just 4 days, weâve got something real to share. đ Tuesday, May 20thâ¨đ 7:00 PM CSTâ¨đ LIVE on YouTube Join me and the family for a candid conversation about life with ALS â or as weâve come to call it, that shitty disease.Weâll talk about the hard stuff, the funny moments, and even those questions people havenât had the nerve to ask out loud.
Thursday, May 15, 2025
Good morning friends, family, and curious onlookers đŁ LIVE EVENT ANNOUNCEMENT đť Seasonâs Sunflower Hour â Special ALS Episode In just five days, weâve got something real to share. đ Tuesday, May 20thâ¨đ 7:00 PM CSTâ¨đ LIVE on YouTube Join me and the family for a candid conversation about life with ALS â or as weâve come to call it, that shitty disease.Weâll talk about the hard stuff, the funny moments, and even those questions people havenât had the nerve to ask out loud.
Wednesday, May 14, 2025
Good morning, good evening, or good nightâdepending on when and where youâre tuning in from.
Yesterday brought another round of golf with Tim and Bill B.âand honestly, it felt like a small win just getting out there again. As ALS keeps nudging its way into everything I do, I find myself more grateful than ever for days like this. Golf, even when it’s more chaos than control, still feels like freedom.
The swing has become a whole new beast. Iâve had to adjust just about everythingâstance, grip, swing length, balance. Itâs like trying to relearn something my body used to know instinctively (almost), but now it speaks a different language. Then we had to add a new element to the game: someone always ready to catch me if I tip over. One behind and one opposite. I imagine the folks in other groups watching from a distance, wondering, âWhatâs with the secret service agents?â
Still, these last two weeks have gone surprisingly well. I played 18 holes (spread out over two weeks, not one day!) and stayed on my feet the entire time. Thatâs a big win. I even saw some improvementâone swing had real lift and probably carried about 100 yards. The guys were so focused on the flight of the ball that they missed my little backward wobble. I caught myself before falling, watched the ball settle, and we broke into high fives. Honestly, I think we were more excited that I stayed upright than the shot itself.
Tim and Bill deserve a big thanksânot just for the company, but for all the behind-the-scenes help: driving me up to the green, grabbing clubs, teeing the ball, and pretending not to notice that I havenât made a single ball mark to repair yet. Maybe next week?
Trying to maintain some semblance of normalcy and freedom isnât easyâbut with help from friends, family, and Cindy, I still get to show up for life. Sure, Iâm slower and shakier, but Iâm lucky. Lucky for the support, the watchful eyes, and the choreography that goes into catching me if I start to go down. Thanks for bringing this kind of closeness to my lifeâphysically and emotionally. It means more than I can say.
On Monday, Mike H. picked me up in his â68 convertible Mustang for a ride around the neighborhood before heading over to the Balasi house. It was a perfect day to be cruising around in this red classic pony âwindows down, engine humming, and plenty of smiles and thumbs-up from everyone we passed.
Then it was just the guys, heading to the Balasiâs, hanging out under the back patio pergola. A couple of drinks (yes, only two), a good cigar, and some well-earned relaxation. Itâs starting to feel like a new ritualâone thatâs easygoing, familiar, and fun, as long as we keep things in moderation. And we did. Itâs amazing what maturity does to keep things safeâŚor safer than when we were 25.
When it came time to leave, I had the choice: a smooth exit in Markâs SUV or one more joyride in the Mustang. Of course, I chose the Mustangâeven though I knew full well Iâd need some serious leverage from Mike to get out of the car. Hopefully, he didnât throw out his back doing it.
Thanks, Mike and Markâit was another fun afternoon. Already looking forward to the next one.
Today will bring more good thingsâI donât know what theyâll all be, but Iâm excited to find out and to keep sharing this journey with you. Thanks for being part of it.
Have a wonderful Wednesday.
Love you guys! â¤ď¸
Tuesday, May 13, 2025
Good morning everybody! More ALS adaptive gear is rolling into the house to keep me moving from A to B. Everything is large, heavy-duty, and takes up space. For every new device, a piece of furniture gets the boot. At this rate, we may need a storage shedâor start listing chairs on Craigslist to make room or empty a room. Yesterday, ALS United delivered the Liftkarâsoon to be dubbed the âstair sherpa.