Today’s post was written by Alex on February 26, the day before Andy left us …
Thank you all for reading Daddio’s blog each and every day, or at least keeping up as much as possible. My dad has the analytics turned off for this blog so we don’t actually know how many of you are out there. There are a lot of days where I have trouble opening Dad’s post because of the emotions it opens up, and I have found help in imagining every one of you readers standing beside me giving me the strength to do so.
Hello friends, family, and followers! I’m Alex, Andy’s son, writing to you today with a story about my Daddio.
Growing up with divorced parents meant that I stayed with my mom for the most part, and then lived with my dad every other weekend. While we aren’t big movie people, there were quite a few weekends where we would go see whatever movie was popular at the time - movies like Revenge of the Sith, Iron Man 1, Jason Bourne, National Treasure, and other action movies like that.
Happy Wednesday, everyone. And happy birthday to Nikki’s husband, Zack!
Where do I start?
When people ask how I’m doing I tell them I’m OK. I’m not really OK but the long answer would involve an exhausting amount of emotion and tears. So rather than go there I thought I’d tell you what we’ve been up to the past few days and our plans going forward. I’m not the writer that Andy was so bear with me.
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.
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.
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.
Good morning, everyone.
This will be a short post today. I’m having serious issues with my hands, and they’re 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 — like everyone else — “What can we help you with?” My typical answer is “Nothing.
Yesterday was different.
I don’t enjoy showering anymore.
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 transfers—wheelchair to stairlift, stairlift to small upstairs wheelchair, wheelchair to toilet, and finally into bed. It’s an exhausting routine, but it’s the price I pay to sleep in our bedroom. Eventually, that will change. A hospital bed will move to the main floor.
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 isn’t all that different from what we’ve 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.
Good morning, everyone.
Well, my stubbornness caught up with me this past week. I suppose it was inevitable.
At the ALS clinic, Diane—the PT I’ve been seeing over the past year—has 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 can’t get them into my shoes with the devices on.
Good morning, everyone.
Wow. It feels like ALS just met exponential numbers and went into overdrive. Maybe that’s reality… or maybe it’s my mind amplifying every change. Either way, yesterday felt different.
My breathing took a noticeable turn. Each breath requires effort now. I’m 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.
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.
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.
We’re getting picked up by a van that allows me to stay in the power chair, so I’m 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.
Good morning, everyone.
Let’s head north to Marshfield, WI, my mom’s hometown. (My version of what I remember)
My mom was the youngest of five children—an 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.
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 — physically and mentally. It’s 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.
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 — 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 you’re down, it doesn’t really matter how gracefully you got there.
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. “Casual” wasn’t in our vocabulary—at 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 parents—Easter, Mother’s Day, Christmas.
Good morning, everyone. And Happy Valentine’s Day. 💝
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.
Good morning, everyone.
Today marks the 72nd anniversary of my parents’ wedding. It’s 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 “nice Polish girl.” 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.
Good morning, everyone.
We continue modifying the house to keep my fall risk as low as possible. Our king bed—hard enough to get into without a disability—had 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 I’d scramble to get my arms behind me and scoot backward into a safe seated position.