Saturday, February 28, 2026
I’ll never forget the day my husband was diagnosed with ALS. The neurologist stood next to the hospital bed, “I hope I’m wrong - I really hope I’m wrong - but I believe you have ALS. " I had no reaction because I didn’t believe it. It couldn’t possibly be ALS. I was sure we would go home and begin researching diseases that mimic ALS but are nowhere near as serious and we would discover the real issue.
Friday, February 27, 2026
Good afternoon, Andy’s Army, This is Cindy again. Just wanted to let you all know what’s been happening with him the past couple of days. Like Andy said in his post on Wednesday, “ALS keeps taking things.” Yesterday, he was not able to type on his phone because his fingers seemed to have a mind of their own. We got an iPad, which should make typing easier and more accurate in the future.
Thursday, February 26, 2026
This is Cindy Hi. Andy won’t be sending a blog post today. I’m going to try to send one on his behalf if I can figure out how. His fingers just aren’t working well enough to type. He’s resting now.
Wednesday, February 25, 2026
Good morning, everyone. This will be a short post today. Iâm having serious issues with my hands, and theyâre making a mess of my typing. They shake so much that I hit unintended keys, which leads to corrections⌠which leads to more errors. Ugh. Tim and Tom have been asking â like everyone else â âWhat can we help you with?â My typical answer is âNothing. Yesterday was different. I donât enjoy showering anymore.
Tuesday, February 24, 2026
Good morning, everyone. I had planned to tell a triplet story today, but we had a major malfunction last night that needs to be addressed. My journey to bed requires four transfersâwheelchair to stairlift, stairlift to small upstairs wheelchair, wheelchair to toilet, and finally into bed. Itâs an exhausting routine, but itâs the price I pay to sleep in our bedroom. Eventually, that will change. A hospital bed will move to the main floor.
Monday, February 23, 2026
Good morning, everyone. Hospice admissions came to the house yesterday and spent a couple of hours walking us through their services. I was genuinely impressed by everything they offer to make me comfortable and to make life a little easier. Truthfully, it isnât all that different from what weâve been doing since the day I was diagnosed with ALS. From the beginning, this has been about managing symptoms, adapting the house, lining up equipment, and finding tools to keep me as independent and safe as possible.
Sunday, February 22, 2026
Good morning, everyone. Well, my stubbornness caught up with me this past week. I suppose it was inevitable. At the ALS clinic, Dianeâthe PT Iâve been seeing over the past yearâhas been encouraging me to wear my AFOs around the house. The AFOs provide ankle support and help prevent my foot from flopping. They work really well. Unfortunately, my feet have been swollen lately, and I canât get them into my shoes with the devices on.
Saturday, February 21, 2026
Good morning, everyone. Wow. It feels like ALS just met exponential numbers and went into overdrive. Maybe thatâs reality⌠or maybe itâs my mind amplifying every change. Either way, yesterday felt different. My breathing took a noticeable turn. Each breath requires effort now. Iâm trying to be judicious about using the ventilator during the day so I can give my dry mouth a break, but that balancing act is getting harder.
Friday, February 20, 2026
Good morning, everyone. Yesterday was a long one, just as expected. We were picked up at 11:00 a.m. sharp. Our driver was cordial and immediately took over control of the power chair, insisting I not touch the joystick. I suspect a past passenger left him with trust issues. Once locked into the van, we headed out. The moment we hit the main road, we knew it would be a rough ride.
Thursday, February 19, 2026
Good morning, everyone. Today is ALS Clinic in Glenview. This is the rescheduled visit from two weeks ago when I had a two-hour coughing fit caused by a liquid prescription that went down the wrong pipe. Weâre getting picked up by a van that allows me to stay in the power chair, so Iâm hoping this ride will be fairly easy. The only complication will be using the restroom. They should all be ADA accessible, but I may need an assist.
Wednesday, February 18, 2026
Good morning, everyone. Letâs head north to Marshfield, WI, my momâs hometown. (My version of what I remember) My mom was the youngest of five childrenâan Irish girl born into a busy household where the next sibling was six years older and the oldest nearly twelve years ahead. She may have been the surprise at the end of the line, but she never felt like an afterthought. As adults, those five siblings stayed fiercely close.
Tuesday, February 17, 2026
Good morning, everyone. Yesterday was a recovery day. Sunday night really sucked the energy out of me. By Monday morning I was running on fumes â physically and mentally. Itâs amazing how quickly the tank can empty. I tried to refill it the best way I know how: an early formula feed and a nap by the fireplace. It helped⌠but I was still in a serious energy deficit. I ended up in bed in the early afternoon and hooked up to the pump for a feeding.
Monday, February 16, 2026
Good morning, everyone. ALS reared its ugly head this weekend. I had a fall in the downstairs bathroom a couple of days ago. It was different from my previous falls. I was holding onto the grab bar with one hand and the vanity with the other when I went to step â and my right leg simply gave way. No warning. It caught me completely by surprise. I managed a somewhat controlled drop to the floor, but once youâre down, it doesnât really matter how gracefully you got there.
Sunday, February 15, 2026
Good morning, everyone! More family lore to go with your morning coffee. Sunday mornings meant 9:00 a.m. Mass at St. Anastasia. That required getting eight kids up, fed, and dressed in proper church clothes. âCasualâ wasnât in our vocabularyâat least not until sometime in the late 1970s when the Church got progressive and brought in guitars to engage the youth. In our grade school years, we made a special effort on the big holidays that mattered most to my parentsâEaster, Motherâs Day, Christmas.
Saturday, February 14, 2026
Good morning, everyone. And Happy Valentineâs Day. đ A Dad Story My dad, Eugene, grew up in North Chicago, a blue-collar town built on grit and steel. It was a tight-knit community of Eastern European immigrants, many of whom spoke little or no English. They worked long, grueling hours in factories and mills with one shared dream: that their children would climb a rung higher on the ladder. Safer jobs. Cleaner hands.
Friday, February 13, 2026
Good morning, everyone. Today marks the 72nd anniversary of my parentsâ wedding. Itâs time to pause ALS updates for a story. My dad grew up in North Chicago, Illinois, of Polish descent. It was a tight-knit community of Eastern European immigrants, and there was an unspoken expectation that he would marry a ânice Polish girl.â At least that was what his mother envisioned for her only son. My mom grew up in Marshfield, Wisconsin, with Irish blood running proudly through her veins.
Thursday, February 12, 2026
Good morning, everyone. We continue modifying the house to keep my fall risk as low as possible. Our king bedâhard enough to get into without a disabilityâhad become a real challenge. To get in, I have to stand from the wheelchair and pivot, aiming my landing onto the mattress. The problem? I could only get the very edge of my backside onto the top corner of the bed. Then Iâd scramble to get my arms behind me and scoot backward into a safe seated position.
Wednesday, February 11, 2026
Good morning, everyone. I had a so so overnight, but itâs still a three-way wrestling match between machine, mouth, and mind. We adjusted the humidity setting on the ventilator and finally found a level where there wasnât excessive condensation dripping through the hose. That part worked. But there wasnât quite enough moisture for me. At 2:00 a.m., I woke up with a desert in my mouth. Once I wake up like that, my mind starts racing.
Tuesday, February 10, 2026
Good morning, everyone. We had to say goodbye to Nikki and Wyatt mid-morning as they headed back home to the DC area. Having them here for two nights really broke up the monotony of my schedule andâmaybe more importantlyâgave me a welcome distraction from ALS. Thank you for making the trip and for giving me that time with Wyatt. He didnât care one bit that I was in a wheelchair. Heâd walk right up and give me more than a quick, polite hug.
Monday, February 9, 2026
Good morning, everyone. The Super Bowl is behind us. Having the squares pool added some excitement to what turned into a defensive struggle. Some of you were rooting hard for a score change, others praying for things to stay exactly as they wereâhoping the numbers would finally lock onto your square. Congratulations to the winners, and thank you to those who donated their winnings back to ALS United. We had a few people over for a pregame chili dinner and the first half of the game.