Sunday, February 23, 2025
Day 194 Good morning, all. I donāt recall if Iāve mentioned this earlier, but the count of days above represents the number of days since my diagnosis on August 13, 2024. I do this to track the progression of my symptoms, to try to understand or anticipate whatās coming, and to keep things in perspective. Maybe it will help those of you reading my daily journal understand where I currently stand.
Sunday, February 23, 2025
Day 193 Good morning, everyone! I hope you have some fun plans for the weekend. Weāre making solid progress on the remodel project. The bathroom tile is in, and today, the hardwood floors are going down. That means the house will be filled with the sound of hammers all day. Iām glad I wasnāt on a bender last night. Thank you, Joe and Donna, for taking Bear this weekendāheāll be much happier playing, lounging, and getting spoiled rather than supervising all the construction activity.
Sunday, February 23, 2025
Good morning! Day 192 (yes, I knowābad math yesterday when I said it was Day 190!). Anyone want me to do their taxes? š¤£ Speaking of taxes, the intensity of tax season has officially reached the “organized chaos” stage. Let me paint you a picture of what that looks like. We operate out of the basement of a local bankāno windows, just the soft hum of fluorescent lights and a Bose speaker to keep people from over-listening or to relax a nervous or bored client.
Sunday, February 23, 2025
Good morning! Day 190 Yesterday was a mixed bag. Trying to lead a somewhat normal life continues to present its fair share of road bumps. Tim, Shawn, and their oldest daughter, Felecia, invited us to lunch. Tim is spearheading an early summer celebration on May 31, 2025 (Day 291), at Illinois Beach State Park. His enthusiasm for bringing together family and friends, both old and new, is infectious. More than just a social gathering, he sees it as an opportunity for people to come out, see me, and perhaps gain some awareness about ALS.
Sunday, February 23, 2025
Good morning, everyone! This morning, I slept in for a changeā¦it was lovely. Spring has to be just around the corner. Iām working with the landscaper on our lawn care contract, so thereās light at the end of the winter tunnel. That reminds meā¦I need to get those electric bikes ordered. I want to use them as soon as temps get above 50Ā°! Yesterday unfolded pretty much as expected. By the time I showered, squeegeed the glass, did my hair, and got dressed, I was utterly exhausted.
Sunday, February 23, 2025
Good morning, family and friends! š„¶ Itās another tax prep dayā¦which means I have to shower and get cleaned up. No big deal, right? Just a simple, everyday task. Nothing to see here. Except, of course, that itās been three days since my last one. Now, letās talk about showers. Once upon a day, I was a daily shower devotee. I wouldnāt dream of starting my morning without standing under a high-pressure stream of hot water until my skin would would wrinkle or the hot water tank went emptyā¦whichever came first.
Sunday, February 23, 2025
Welcome to Monday, where the air is so cold it practically bites back. Another week of arctic chill awaits those who need to venture outside to work or walk the dog! š Sunday was a rare and special day spent with my siblingsāsomething that doesnāt happen nearly enough. Having seven siblings means thereās always someone in the rotation, but it also means others end up on the bench, waiting for the next family huddle.
Sunday, February 23, 2025
Good morning, friends and family! Letās talk about what came out of my ALS Clinic visit on Thursday. Iāve already shared the emotional side, but I owe you the clinical detailsāthough, letās be honest, thereās plenty of emotion tied into each discipline I saw throughout the day. Knock knockā¦ itās pulmonary, the first of many visitors through the revolving door of my exam room. Time to breathe into a device that measures my lung strengthāboth inhaling and exhaling.
Sunday, February 23, 2025
Good morning, everybody! We managed to get out for a Valentine’s Day dinner yesterday, and let me tell youāit was an adventure. We hit the restaurant at 4:00 p.m., thinking we’d beat the rush because nobody is ever in the restaurants at 4:00 pm. Rookie mistake. The parking lot was packed as we pulled in and all the handicap spots were takenā¦bummer. Just as we were about to lose hope, we spotted a woman getting into her car in one of the handicap spots, looking like she was leaving.
Sunday, February 23, 2025
Thank you, everyone, for pointing out my goof yesterday in writing the wrong date for Valentineās Day. It was actually intentionalāto make sure you had time to get something for your sweetheart. At least I know youāre reading these posts. So, happy Valentineās Day today, from our hearts to yours. š Yesterday was a long day at the ALS clinic, so when I woke up this morning at 4:15 am, I wasnāt sure what to capture from the day because so much had happened.
Sunday, February 23, 2025
Good morning! This is your friendly public service announcementātomorrow is Hallmarkās biggest money-making day of the year. Valentineās Day, donāt forget your sweetie. Yesterday was a paperwork and organizing dayāwell, not for me, but for Cindy. Bless her heart, sheās on a mission to declutter in preparation for the inevitable day when weāll need more space. I know how hard it is to part with things that have been around for decades, each item carrying a memory or a story.
Sunday, February 23, 2025
Good morning! Welcome to the midpoint of winter, where hope for spring is going to be crushed under the weight of fresh snow and plummeting temperatures. Just Sunday, I was dreaming of warm breezes, blooming flowers, and bike rides, and now, here we areāfacing subzero temps just to make sure I know who’s in charge. (Itās not me.) I really dislike winter.š„¶ Yesterday, at Tax-Aide, it was a surprisingly pleasant tax day.
Sunday, February 23, 2025
Good morning, everyone. I got some solid feedback on electric bikes following yesterdayās post. The best advice? Get a three-wheeler. I can already see the day when mounting and dismounting a bike becomes an Olympic event for me. Probably best to steer clear of clip-in shoesā¦ though I still have them, just in case I wake up one day feeling particularly brave (or reckless). Lis and Steve stopped by for a visit after traveling cross-country the last couple of days.
Monday, February 10, 2025
Late start for me this morningāI was finishing up a dashboard for the tax team so they could see the results of our combined efforts. Last nights Super Bowl was great if you were an Eagles fanā¦not so much for the other team. I enjoyed the gameā¦at least through 3 quarters. Then off to bed. I must be getting really old, because the commercials during the game were lame and the halftime show was unexplainable to me.
Monday, February 10, 2025
Good Morning! What a whirlwind of fun these last two days have been with the kids and grandkids! Wyatt and Coco were all smiles, their energy boundlessā¦at least whenever we were around. Whether they were just putting on a good show for us or truly basking in the moment, I donāt know, but Iāll take it! It was a full couple of daysā2,000 wobbly steps' worth, to be exact. And trust me, I feel every single one of them this morning.
Monday, February 10, 2025
Good morning, family! Howās everyone doing? The Brickhouse crew flew into town yesterday, and we met up at a brewery in Mundelein called Tonality. Since it was late, we didnāt see the little ones, but I did catch a great photo of Coco. Her hair was down, completely covering her face, andāsurprise, surpriseāshe tripped and fell walking through the airport. A stranger commented, āWell, if her hair wasnāt in her eyes, that wouldnāt have happened.
Monday, February 10, 2025
Good morning, everyone! āļø Welcome to Fridayāthe glorious end of the workweek and the kickoff to Super Bowl weekend! My prediction? Eagles 28 - Chiefs 24. Why? Because someone else needs to win. Wellā¦I finally feel human againā¦the spigot is off and the head feels clear. This may be the last day of medicine. So, yesterday, we woke up to a lovely sheet of ice. In years past, Iād load up the spreader with ice melt and hit all the townhomes before the early risers shuffled out.
Monday, February 10, 2025
Good morning. Today was a difficult writing day for me. I wrote, deleted, rewrote, deleted, and finally ended with the following: Another day, another 1,440 minutes. And this morning, I wake up still sick. The doctor confirmed itās just a viral infectionānothing serious, nothing that can be fixed with more time and a handful of over-the-counter meds. See photo to follow. This week, I crossed a milestone: 250,000 minutes since my ALS diagnosis on August 13.
Monday, February 10, 2025
Good morning, yāall. (That still doesnāt feel natural, but Iāll keep trying.) Still sick, still feeling like garbage. I need to get to the doctor today and hope they can squeeze me in. Apparently, getting a Z-pack without an appointment is a no-go. Iām sure thereās a good reason, but in my current state, it just feels like bureaucracy standing between me and breathing properly. I spent most of the day messing around with the excel dashboard for our small tax teamātrying to clean it up so I can hand it off next year.
Monday, February 10, 2025
Good morning, everyone. Well, Iām sicker today than I have been. š¤ I felt great all day yesterday, and we even went out for dinnerānot a good decision, based on this morningās hacking and blowing. Sorry, Mark and Barb. I had plans today to get out of the house and prepare taxes š¤, but I just canāt risk sitting next to or across from seniors. Iām disappointedāI really donāt like being absent and missing all the interactions with our clients, some of whom Iāve known for 10 years.