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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Why I do what I do, this way
Week 26: Our Co-Mission Key verses Matthew 28:18-20 (NLT) Jesus came and told his disciples, “I have been given all authority in heaven and on earth. Therefore, go and make disciples of all the nations, baptizing them in the name of the Father and the Son and the Holy Spirit. Teach these new disciples to obey all the […]
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Building an AI research partner, personalized for you
I wanted to create a research partner to help me work through theological questions. Andy Pattison motivated me with the work that he had done with ChatGPT. I liked what he did, but I wanted to add more perspectives from other theologians. The pattern I am going to demonstrate will work on any research you […]
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I choose joy, hope, life, and Jesus
Week 24: Election and predestination Key verses Matthew 22:14 (NLT) For many are called, but few are chosen. Joshua 24:14-15 (NLT) So fear the Lord and serve him wholeheartedly. Put away forever the idols your ancestors worshiped when they lived beyond the Euphrates River and in Egypt. Serve the Lord alone. But if you refuse to serve the Lord, then […]
