Day 198
Good morning, everyone!
Thank you for being part of Andyās Army. Every morning when I wake up, Iām humbled that so many of you want to read about my life with ALS and how weāre managing this shitty disease. And by āwe,ā I mean the collective āweāāall of you who are part of our lives, plus the ones Iām sure we donāt even know about. Your support, love, friendship, and joy mean the world to us, and I couldnāt be more grateful.
Day 197
Good morning, everybody!
A brand-new day to appreciate, endure, and enjoy.
Last nightās sleep? A disaster of sorts between 2:00 and 4:00. Fitful, restless, and punctuated by dreams that felt just a little too real.
Yesterday was Tuesday tax day, and it was an absolute madhouse. We were backed up all day, and you could see the frustration brewing in peopleās facesā¦arms crossed, feet tapping, and eyes rolling and scanning the room wishing for eye contact to impress upon us, their agitation.
Day 196
Good morning, friends and family!
Itās Tuesday Taxes! I genuinely look forward to these days. I know that sounds strangeāmaybe even downright bizarreāto most of you, but I actually enjoy this type of volunteering. As they say, donāt knock it until youāve tried it! Then again, now that I think about it, everyone reading this is going to be involved in taxes one way or another. Good luck! āļøšøšøšø
Day 195
Good morning, everyone. Welcome to a new week as we turn the calendar to March. Soon, another time change, which I really dislike, will be upon us. We can talk later on that.
The taper (sounds like a Mafia figure) arrived yesterday at 7:15 a.m. with his 10-year-old son, Alexander, after driving an hour to get here. Thatās early for a Sundayāsimilar to waking Alex up for his weekend swim meets.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.