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.
Early journey with faith
2023 Walk to Defeat ALS
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.
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Featured ALS Tools from the Toolbox
Latest Reflections
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Living with ALS is totally tubular…I have 5!
ALS is best known for what it takes away. Well, it has given me something new. Tubes. I am up to five so far. That’s correct. I have five tubes in my body because of ALS. I will break them down by when I got them and why I chose to get them. Round 1: […]
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Walking and talking with Dad in the garden
Week 20: Prayer Key verses Matthew 6:9-13 (NLT) Pray like this:Our Father in heaven, may your name be kept holy.May your Kingdom come soon.May your will be done on earth, as it is in heaven.Give us today the food we need, and forgive us our sins, as we have forgiven those who sin against us.And don’t […]
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How I use AI for my daily work and life
The rise of artificial intelligence (AI) capabilities with the advent of large language models (LLM) has changed how I work and live. When ChatGPT arrived, it really shook up what we thought was possible. We have been living in this new reality for a while now. AI has huge potential for improving accessibility. It is […]
