Our Story
Our ALS story begins in July 2021. Steve started losing dexterity in his fingers. For example, he struggled screwing in a light bulb. By September, he could not button his shirt and started having difficulty lifting his laptop bag into the overhead bin on an airplane. He visited a hand specialist in October who suggested this could be ALS. Steve went through a battery of tests in December which confirmed the diagnosis.
Steve and Sheila leaned on their faith, believing that God has a plan. We took a road trip from Burnsville, Minnesota, to Key West, Florida, to process everything. We realized that we needed a more accessible house and decided to move to Kentucky to be closer to Steve’s parents and the UK ALS Clinic. We moved to Frankfort, Kentucky, in April 2022.
Since that time, Sheila has stepped in as Steve’s primary caregiver, Steve continued to lose functionality, and family and friends have prayed for and supported us through it all. Today, Steve has lost the use of his hands, legs, and voice. He continues to be “active” using his eyes. We continue to live to the fullest, thanks to our faith, family, and friends!
Steve’s May 2023 Update
This was the first video that I created for the Data on Wheels YouTube channel. I took the time to tell the story of our journey with my ALS and its impact on our lives up to this point. The video is around 26 minutes long.
Steve’s June 2024 Update
Steve gives us his update of his disease progression and life impact from June ’23 through June ’24. Some of the impacts on Steve are evident in the video.
Sheila’s Update from the Walk to Defeat ALS, August 2025
Sheila was asked to share our story coming into August 2025. It was an opportunity for her to add a caregiver’s perspective.
Roll with Steve and subscribe!
It will only take a minute
Featured ALS Tools from the Toolbox
Latest Reflections
-
She Taught Me to Code–A Tribute to Sheila, My Wife
I originally posted this in 2015 on my Data on Wheels in my Tribute series. I wanted to share it again on Valentine’s Day 2026. She Taught Me to Code My wife, Sheila, actually did get me started down the programming path. We had been married just over a year when she showed me how […]
-
Jesus is greater than any of our heroes, real or fictional
Week 6: Jesus and Moses Key verses Deuteronomy 18:18 (NLT) I will raise up a prophet like you from among their fellow Israelites. I will put my words in his mouth, and he will tell the people everything I command him. Acts of the Apostles 13:39 (NLT) Everyone who believes in him is made right […]
-
Living a holy life is mundane and purposeful
Week 5: Holiness Key verses Leviticus 11:45 (NLT) For I, the Lord, am the one who brought you up from the land of Egypt, that I might be your God. Therefore, you must be holy because I am holy. 1 Peter 2:9 (NLT) But you are not like that, for you are a chosen people. […]
