Tuesday, September 9, 2025
Good morning! Wedding day T-minus 4 days. Sorry if Iâm a little obsessive about Alex and Nicoleâs wedding this Saturday, but Iâve probably spent more hours thinking about this day than almost anything else in my lifeâbecause 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 Iâd even still be here.
Monday, September 8, 2025
Good morning everyone. Itâs finally hereâwedding week for Alex and Nicole. Saturday is the day Iâve been counting down to, and Iâm sure theyâve been doing the same. It wasnât that long ago that it seemed this day would never arrive and now weâre 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 theyâre not quite the dance partners Iâd hoped theyâd be.
Sunday, September 7, 2025
Good morning, Andyâs Army. Yesterdayâs post was missing the photo of Andyâs Army Chicago Marathon shirt. These mistakes happen here and thereâŚfortunately there are people to catch them for me. I ended up posting the photo separately, but in case you missed it, Iâm posting again this morning. Yesterday brought me a gift I never saw coming. Lisa, a good friend of Barbâs from high school, is in town for their 50th reunion.
Saturday, September 6, 2025
WhoopsâŚforgot to post the t-shirt photo in the blog this morning.
Saturday, September 6, 2025
Good morning, itâs good to be with you. Weâre putting together a list for anyone interested in a t-shirt to support the Andyâs Army runners of the Chicago Marathon on October 12, 2025. Look for the photo below. So far weâve got about 50 people signed up. Price is still TBDâit wonât be much. You donât need to attend the race to get one⌠if youâd like a shirt, reply to Cindy, me, or this blog.
Friday, September 5, 2025
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 battle⌠and then a second one showed up đł. I frantically crushed that one too, and suddenly my adrenaline was fired up before I even started to write. WhewâŚglad thatâs resolved.
Thursday, September 4, 2025
Good morning!! Yesterday was the ALS Classic at Cog Hill in Lemont, and it was packed with highlightsâtoo many to list, but Iâll try to give you the best of them. Nicole flew in for the day, arriving at OâHare 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 wasnât until 11:00, and even then we were early at 10:30.
Wednesday, September 3, 2025
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 Iâve 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 heâd resubmit the order in hopes of moving it along.
Tuesday, September 2, 2025
Good morning. Well⌠Iâm back in my chair, but still no sign of the big bad brown spider. Iâm just hoping it doesnât decide to peek out while Iâm sitting here. Iâve been enjoying the Prey books and Iâm 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.
Monday, September 1, 2025
Good morning, Happy Labor Day! Spiders and snakes. Those are two things that give me the creeps. Which still surprises me, because as a kid I wasnât fazed by either. We used to collect garter snakes by the dozens and keep them in a Styrofoam cooler in the basement. I donât think we ever had a plan for themâthey were just our âpets,â hidden from everyone else in the house.
Sunday, August 31, 2025
Good morning, friends and family. Coming up this Wednesday is the ALS United Classic, a golf tournament to raise awareness and money for ALS. I was invited to play, but the idea of playing golf scared me so I didnât commit immediately. These days, swinging a golf club feels a little like entering a dance competition and told not to step on my partnerâs toes. My balance is highly questionable, and staying upright is not guaranteed.
Saturday, August 30, 2025
Good morning, and welcome to the last days of August. With Labor Day upon us, those winter thoughts start creeping in. Sorry. Iâve missed a whole string of birthdays my high school friends celebrated this month. Happy Birthday to Carrie, Chrissy, Paul, Tom, and Pamâall in the last week. I hope you were surrounded by laughter, love, and a cache of friends and family. đđĽłđđ At dinner on Thursday, Terri was told me about an NBC feature story on a man named Rakesh, living with ALS from a rare genetic mutationâso rare itâs called a ânano rareâ condition.
Friday, August 29, 2025
Good morning, everyone. Thank you for being here today. Last night we had dinner with my old IMC work friendâmy âwork wifeââTerri, and her sister Marilyn. (For those who donât know, IMC was the company I worked at before it merged with Cargill and became Mosaic.) Terri and I worked side by side for 20 years, so itâs always a treat to reconnect. Marilyn lives with a rare neurological condition called Transverse Myelitis (TM), which causes inflammation of the spinal cord.
Thursday, August 28, 2025
Good morning all, and thank you for walking this ALS journey with me. Iâve shared before about one of the more unpredictable symptoms of ALS: pseudo bulbar affect (PBA). About half of ALS patients experience itâsudden waves of emotion that come out of nowhere. A couple weeks ago I was prescribed a drug called Nuedexta to help manage it, but swallowing the pills was too difficult…I kept choking them back up.
Wednesday, August 27, 2025
Good morning, and thanks for joining me on the road today. We had a busy oneâwell, busy for me anyway. The outdoor pool closes at the end of the month, and just like last year, Cindyâs determined to squeeze in a few last visits before summer comes to a screeching halt. It almost doesnât make senseâsheâs not a sun goddess, rarely dips in the water (neither do I), and prefers peace and quiet.
Tuesday, August 26, 2025
Good morningâhere we are in August, and Iâm actually thinking about turning on the fireplace. On second thought⌠I am. No reason to sit here chilled when itâs 49° outside! In a few hours, of course, the A/C will kick on. No wonder the utility bills are so high. Every four weeks we have our house cleaned by a Polish woman named Beata. Sheâs been coming here for years, and at this point sheâs more than just someone who cleansâsheâs a trusted friend.
Monday, August 25, 2025
Good morningâitâs celebration Monday! Alex turns 30 today. Happy Birthday, bud! đ Back when I was working, the birthday rule was simple: the person celebrating brought the treatsâdonuts, bagels, whatever. A little backwards when you think about it, but it spared the office from decorating every other week. Maybe that was just the lazy way out. However your workplace rolls, may it be a good one today. Yesterday we met Alex and Nicole at Cooperâs Hawk for Sunday brunch.
Sunday, August 24, 2025
Good morning friendsâletâs have a chat about life. On Thursday, Ellen, my palliative care PA, stopped by for my monthly health assessment. I like herâsheâs easy to talk to, knows her stuff, and never pressures us into decisions. At the ALS clinic, we were asked if weâd completed a POLST formâPractitioner Order for Life-Sustaining Treatment.Weâve already done the Power of Health, but not that one. Ellen handed us the form, and I gave it a glance.
Saturday, August 23, 2025
Good morning from the land of canes, coffee, and cushions. The other nightâagainst the advice of every medical professional in my lifeâI ditched the breathing machine. Because? Mouth dryness so severe I feel like Iâm chewing on chalk. Not a good decision. Live and learn⌠as I slept I mostly tossed and turned for four hours, then got rewarded with COâ buildup and a pounding headache. As much as I want to sleep without a breathing aide, ALS keeps reminding me whoâs in charge.
Friday, August 22, 2025
Good morningâtoday begins with gratitude, and it begins with you. First, thank you to Peggy, my care coordinator and friend. She read the blog yesterday and noticed my need for a cushion for my bony backside and jumped on it right away. In a day or so, relief will arrive for my achy bony butt. I keep mentioning difficulties Iâm having and Peggy keeps finding solutions to them. Thank you!!