Good morning, blog readers. Welcome to Saturday!
A quick reminder: weāre ordering Andyās Army t-shirts for the Chicago Marathon. We added about a dozen names to the list yesterday. Iāll publish the updated list tomorrow with everyone whoās requested one. Orders close at the end of the day Sunday, so if youād like a shirt, let us know. Cost is still TBD but will be nominal.
Yesterday morning, my triplet brother Tom stopped by with a big pot of his homemade chiliācomplete with shredded cheddar, sour cream, and oyster crackers.
Good morning. Happy Friday!
We had a lunch date with Rob H. at Chessieās in Barrington yesterday. Iām glad it was on the calendarāI needed to get out, soak in the beautiful fall weather, and connect with people. I was starting to slip into a funk just sitting at home. Thanks, Rob, for checking in and picking up the tab. Itās on us next time.
Today the humidifier for my respirator arrivesāyeah!
Good morning, blog readers.
Itās been a quiet week with a touch of post-wedding blues. The whirlwind of Alex and Nicoleās big day, combined with my physical fatigue, has me feeling a little flat.
The best way I can explain it is with an Ironman analogy. When you train for an IM, it becomes all-consuming. Every spare minute is dedicated to preparationāyou borrow time from work, family, sleep, and just about everything else.
Good morning everyone.
Wellā¦here we are: 400 days since the ALS diagnosis. What a ride it has been. Iāve had far more highs than lows, and the progression has been slow enough that this shitty disease didnāt dampen Alex and Nicoleās weddingāas youāve seen this past week. Still, thereās no ignoring the toll: Iāve lost 40 pounds (about a pound every 10 days, or three per month), and walkingāeven with the walkerāhas become increasingly difficult.
Good morning, blog fans.
I have to believe many of you who traveled to the wedding this past weekend are still in recoveryāunless youāre under 30. Am I right? My tiredness canāt be chalked up to ALS alone.
Neon Prey showed up while we were gone, and I started it yesterdayāsqueezed in between about ten catnaps. Honestly, I couldnāt do much else. Today the palliative nurse comes at 1:00 p.m., and outside of that, itāll be another quiet day of reading and staying off my legs.
Good morning, welcome to Monday.
Weāre back in Crystal Lake this morning, and I feel weary. Traveling is always physically exhausting for meāand when you add the emotional weight of a wedding weekend, this trip was no exception. I swear thereās an inverse relationship between the joy of a family wedding and the fatigue that follows.
What follows is a recap of the day, which will take a few days to capture it all.
Good morning my friends and family.
Congratulations to Alex and Nicole on their marriage yesterday!!
It was a wonderful, fulfilled magical wedding day for Alex and Nicole. The whole day was perfect and there is much to talk about. Itās going to take a few days to provide the highlights. And since I slept in this morning, youāll have to wait until Monday for details.
Iāll leave you with the father of the groom wedding toastā¦.
Good morning!! š
The big day has arrivedāAlex and Nicoleās wedding day. For 396 days this date has lived in the back of my mind. I was always worried that something with my health might keep me from being here, or that Iād somehow detract from the occasion. But here I am, and today feels like a gift.
This weekend has already been terrific. Family on both sides have gone out of their way to make sure Iām safe, comfortable, and included.
Good morning from the Jordan Hotel at Sunday River in Maine.
This is a remote spot that doubles as a lively ski resort. They average more than 100 inches of snow, and the runs look plenty challenging. I can already see some ski days in Alexās futureāif he ever decides to take it seriously. Nicoleās family cabin is less than 30 minutes away, so the convenience factor is covered. Convincing Alex will be the tough partātoo many years of winter swimming instead of skiing!
Good morning from Portland, Maine.
Our day started way too early, with too much luggage and barely enough hands to manage it. At least we had a service drive us to the airport and Mark and Barb were our traveling companions or they would tell you that they were more like Sherpas considering all the luggage they had to help us with. Seriouslyā¦it was too much and we would have been screwed without them.
Good morning, blog readers. Wedding, T-minus three days.
Weāre off to Maine this morning with a 7:00 a.m. pickup to OāHare.
Itās going to be a tiring day, mostly because the night didnāt go smoothly. At 2:15 a.m., I knocked the respirator hose off my mask. With the mask on, Iāve never been able to reconnect the hoseāI tried. After giving up and shutting the machine off, I just wanted to fall back asleep.
Good morning! Wedding day T-minus 4 days.
Sorry if Iām a little obsessive about Alex and Nicoleās wedding this Saturday, but Iāve probably spent more hours thinking about this day than almost anything else in my lifeābecause I was never sure how far my ALS would have progressed by now. A year ago, when I was just learning what ALS could do, I honestly wondered if Iād even still be here.
Good morning everyone.
Itās finally hereāwedding week for Alex and Nicole. Saturday is the day Iāve been counting down to, and Iām sure theyāve been doing the same. It wasnāt that long ago that it seemed this day would never arrive and now weāre at T-minus five days. I can feel the excitement building and a little nervousness as well.
My legs have carried me to this point, though theyāre not quite the dance partners Iād hoped theyād be.
Good morning, Andyās Army.
Yesterdayās post was missing the photo of Andyās Army Chicago Marathon shirt. These mistakes happen here and thereā¦fortunately there are people to catch them for me. I ended up posting the photo separately, but in case you missed it, Iām posting again this morning.
Yesterday brought me a gift I never saw coming. Lisa, a good friend of Barbās from high school, is in town for their 50th reunion.
Good morning, itās good to be with you.
Weāre putting together a list for anyone interested in a t-shirt to support the Andyās Army runners of the Chicago Marathon on October 12, 2025. Look for the photo below.
So far weāve got about 50 people signed up. Price is still TBDāit wonāt be much. You donāt need to attend the race to get oneā¦ if youād like a shirt, reply to Cindy, me, or this blog.
Good morning from a comfy, spider-free zone with a toasty fire warming this early morning.
My giant brown, poisonous in my imagination. spider finally came out of hiding and started crawling up the fireplace brick. This time I won the battleā¦ and then a second one showed up š³. I frantically crushed that one too, and suddenly my adrenaline was fired up before I even started to write. Whewā¦glad thatās resolved.
Good morning!!
Yesterday was the ALS Classic at Cog Hill in Lemont, and it was packed with highlightsātoo many to list, but Iāll try to give you the best of them.
Nicole flew in for the day, arriving at OāHare at 7:00 a.m. Since no one was volunteering for a sunrise pickup, she spent a few hours in the Admirals Club before we all met at the course. Check-in wasnāt until 11:00, and even then we were early at 10:30.
Good morning, new friends, old friends, and friends forever.
Yesterday I saw my pulmonologist, Dr. Shah, for what may well be my final visit. We talked through the remaining treatment options, most of which Iāve already received. The one thing still pending is the humidifier that was ordered a month ago to help with my dry mouth at night. Dr. Shah said heād resubmit the order in hopes of moving it along.
Good morning.
Wellā¦ Iām back in my chair, but still no sign of the big bad brown spider. Iām just hoping it doesnāt decide to peek out while Iām sitting here.
Iāve been enjoying the Prey books and Iām on the last one that was mailed. (Hint, hint.) Of course, this week is packed with doctor appointments and other commitments, so reading time will slow down for a bit. I also want to give Amazon a chance to drop off any packages.