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!
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
Good morning from the heartland. âď¸
My apologies to all the moms out thereâI totally missed Motherâs Day yesterday. So, a heartfelt Happy Belated Motherâs Day! I hope your day was filled with love, laughter, and at least one meal you didnât have to cook.
Things around here continue to be fluid. Every day has a slightly different rhythm, like lifeâs running on shuffle mode.
Yesterdayâs main event was smoking the pork belly.
Good morning, friends, family, and curious onlookers.
Itâs a strange season in the neighborhood. Within the span of a single year, our tight little community of eight townhomes has shifted more than it had in the previous two decades. Iâve always believed in knowing your neighborsânot just enough for a polite nod, but well enough to lend a tool, share a story, or show up when something breaks. For over 20 years, this has been a place full of life and connection.
Good morning readers, welcome to the weekend.
I want to say thank you for the responses and comments Iâve received on various blog posts. Your messages are inspiring, compassionate, and emotional. Theyâve stopped me in my tracks, made me reflect, and even let a tear or two fall. I love that youâre walking this road with me. And your confessionsâthat you enjoy my writings, my musings, my groggy brain dumpsâhumble me more than I can say.
Good morning, one and all.
The City of Crystal Lake is keeping its promise.
Our small subdivision, of eight townhomes, connects to Huntley Road, a major arterial with no crosswalk and a rise in the pavement that limits visibility. You get less than five seconds to dash across before a car comes flying over the hill. Thatâs if theyâre observing the 35 mph speed limit (cue sarcastic laugh). Realistically, everyoneâs going at least 5â10 mph over.
Good morning! đ
Some mornings, I wake up feeling like the same guy Iâve always beenâcoffee sounds good, sunshine looks nice, letâs see what the day brings. And then I rollover, plant my feet on the floor and go to stand. Sorry⌠back to reality. Each morning Iâm reminded of where I am with ALS and the new challenges arising. Breathing wants a front row seat.
When I was diagnosed last August, my breathing numbers were surprisingly solid.
Good morning, friends, family, and others following along.
Go ahead and circle Monday, May 20 at 7:00 p.m. CST on your calendar. Our family will be featured in a one-hour livestream called Seasonâs Sunflower Hour, where weâll talk about how ALS has affected usâand what weâve done to keep moving forward through the ongoing challenges. I wish every one of you could be directly included in the show, because youâve all been walking this path alongside us.
