Good morningâitâs Friday! Hope you have some exciting plans for the weekend.
Yesterday, we had the privilege of meeting a young man named Dean, whoâs traveling across the U.S. gathering perspectives from individuals diagnosed with ALS.
Dean is 19 years old, freshly graduated from high school, and using his summer breakâbefore heading off to collegeâto pursue this project. I thought back to where I was at 19, and I can tell you with absolute certainty: I wasnât anywhere near mature enough to take on something this meaningful.
Good morning, blog readers.
I want to say thank you for being part of this ALS journey with us. As youâve seen through my posts over these many months, itâs not an easy road. But your presence, encouragement, and supportâŚalong with the kind words about my writingâŚcontinues to humble me.
Honestly, I thought by now I mightâve lulled you into complete boredom. I figured at some point you’d grow weary of these morning diatribes.
Good morning.
Yesterday, I mentioned to Cindy that I find myself doing a kind of improvised country line dance when I walkâjust without the music, rhythm, or control. Itâs a lot of steps, a lot of corrections, and absolutely no two routines are the same. Every trip across the room is a new piece of choreography. The footwork is awkward, the balance is questionable, and the tempo is whatever gravity decides.
Good morning! âď¸
Thanks to everyone who chimed in with suggestions on how to transport the new beast of a wheelchair. I was genuinely surprised by how many of you weighed in. The overwhelming consensus? Bite the bullet and get a modified vehicle nowâsolve the problem once instead of nickel-and-diming it for months, only to end up in the same place anyway. I agree. Itâs time to rip off the Band-Aid.
Good morning! Welcome to a new week!
Todayâs post is all about finding a practical solution. No emotional, philosophical or social engagement thoughtsâŚjust pros and cons dealing with an ALS problem.
Before we go there, Happy Birthday to Mike and Bethâs granddaughters, Lainey and Lilly, who turned 8 over the weekend! Hope you had a great party!
Yesterday, I reached out to my brother Tim and asked if he could come over and bring down our trailer hitch from storageâŚpacked into the recesses of the garageâŚthe one we normally use to transport extra gear on road trips.
Good morning, everyone! Itâs Sunday.
Two months from today is Alex and Nicoleâs weddingâbut whoâs counting? (Me. Iâm counting!) Honestly, I think my body might just hold up until then. Iâm still walking⌠not gracefully, but technically, it counts. And Iâm really happy with where things stand right now. A year ago, I wasnât sure Iâd even be walking at this point. So yeah, this feels like a win.
It was about two months ago that a technician came out to take measurements for my new power wheelchairâthe fancy-dancy one with all the bells and whistles designed to keep me mobile and functional as ALS progresses.
Good morning!đ¤Š
Yesterday morning, I had a tough start early in the day.
I was out on the patio early, trying to set up the Big Green Egg to cook some bacon. The coals were fired up, and I was working through the usual steps. I reached for the ceramic deflector stoneâbut I couldnât lift it. My arms and hands just wouldnât cooperate. As I stood there, struggling with something I used to do without thinking, our neighbor Laurie walked over.
Good morning⌠itâs Friday!
Wow! I canât believe I slept in until 5:30 a.m.! I know that sounds weird, but thatâs late for meâand it throws my whole morning off. Even stranger is the mini panic attack it triggers, like Iâm going to be late for work or miss an appointment. Iâve taken this blog seriously enough that I want it published by 7:00 a.m. CST so itâs timely each day.
Good morning, friends, family, and fans!
Itâs Throwback ThursdayâŚguess I better dig up a photo where I still had biceps and functioning vocal cords since we didnât take a photo yesterdayâŚa miss!
Yesterday, we met up with Lis and Steve for lunch at Seasons 52 in Schaumburg. Theyâre heading off to London and then cruising through the Norwegian Fjords. What a great trip!
Lunch was excellent, though the noise level rivaled a middle school cafeteria on parent day.
Good morning and hello to Wednesday.
I finally have my littleâand I mean littleâaudio studio set up to record my voice (or anything else I feel like recording) from here on out. Itâs tucked into the corner of the guest bedroom, but the key is: itâs ready. All I have to do now is plant my butt in the chair and get it done. With some practice, Iâm hopeful I can capture a voice recording that still sounds like me.
Good morning. Itâs Tuesday.
Itâs been a quiet few days at homeâŚreading and working on a jigsaw puzzle as a distraction from watching the heartbreaking news out of Texas.
The loss of so many lives has been shocking. The images of destruction are nearly impossible to process. And the tragedy at Camp Mysticâthe loss of campers and counselors who never made it homeâŚfeels especially crushing. It weighs on me in a way I didnât expect.
Good morning, and welcome to a new week of life.
First, sending love and condolences to my cousin Renee and her husband Doug, who lost their 16-year-old dog, Posey, over the weekend. Iâm so sorry. đ˘
ALS update.
WEIGHT⌠I started my new diet a couple of weeks agoâŚthough realistically, itâs only been a week since I finally started having success with my formula feedings. That first week was rough.
Good morning, rise and shine!
Itâs the last day of the 4th of July weekend. Weâre hoping to catch the parade todayâif the rain doesnât interfere. Outrunning raindrops in a wheelchair is tricky business, but hey, itâs only water. Not the worst thing that could happen.
The last couple of weeks have been hot⌠even by my standards. My internal heating and cooling system is completely out of whack. I used to carry a pullover everywhereâŚespecially if we were going to a restaurant where the A/C was cranked.
Good morning!
Itâs the morning after a full night of fireworks đ§¨âŚ mostly what Iâd call flash-bangs. No oohs and aahsâŚjust loud explosions deep into the night. I love a good fireworks show, but I donât get the thrill of making loud noises on repeat while the rest of the neighborhood is trying to sleep. My fantasy payback? Track down where these guys live and launch my own barrage of noisemakers.
Good morning.â¨Happy 4th of July! đđđ§¨
The 4th has always been one of my favorite holidays. The weather is usually perfect, and if you can stay up late enough, the firework shows are well worth the waitâŚwith plenty of chances to âoohâ and âahhâ along the way.
We probably wouldâve gone up to Fence Lake this weekend if it werenât for the setbacks from the feeding tube surgery. Thereâs just something about sitting on the pier, watching some of the best firework displays money can buy.
Good morning!â¨Today marks the start of Crystal Lakeâs 4th of July celebration.
Thereâs a festival here every weekend this time of year, and this one kicks off today. Like most local fests, itâs pricey, hot, crowded, loudâŚand carries that unmistakable summer funk. Must be the porta-potties, since there arenât any petting zoo animals for the kids to torment.
Itâs also a sentimental day for Cindy and me. Twenty years ago, we got engaged at this very festival.
Good morning.
Yesterday was a mixed bag. This whole idea of staying distracted from ALS⌠well, some days it works better than others.
Thereâs plenty on the horizon to lift my spiritsâthe July 4th holiday is almost here, and weâre heading to Fence Lake later this month. Just the thought of being up there, surrounded by water, trees, and family, is a bright spot. And weâve got lots of visits lined up with friends and familyâsomething to genuinely look forward to.
Good morning to you all⌠wherever you are on this first day of July.
Yesterday turned out to be a good day. Iâm finally starting to feel like Iâve turned the corner from last weekâs surgery. The pain is now just a dull ache, and I tolerated my feedings during the dayâBIG WIN!
I actually had a food craving in the morning, so I started the day just like I used toâŚ.
Good morning, everybody!
Hard to believe itâs only been a week since my âeasy peasyâ feeding tube procedure. If youâve followed the blog, the last week, you know it was not so easy. And not so peasy.
I went in last Monday feeling confidentâŚDr. Ujiki was my surgeon, and he came highly recommended. One of the nurses even ranked him higher than Dr. Bilimoria (whom Iâve basically placed just below God on the talent-and-personality chart).
Good morning, blog readersâŚ
Iâm slowly returning to normal, health-wise. But now I find myself a bit hesitant to do another tube feeding. Somewhere along the way, my mind linked those feedings to the weeklong constipation saga. Itâs probably all the nausea I felt after each one. So thatâs my next hill to climbâŚrebuilding some trust in the tube.
That said, there is one clear win with this feeding tube (which, by the way, needs a name).