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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When is right not enough?
Week 19: Deeper Morality Key verses Matthew 5:20 (NLT) But I warn you—unless your righteousness is better than the righteousness of the teachers of religious law and the Pharisees, you will never enter the Kingdom of Heaven! Matthew 5:44 (NLT) But I say, love your enemies! Pray for those who persecute you! Right or righteous? Jesus […]
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Share your journey with CaringBridge
When we were first dealing with my ALS diagnosis, Sheila and I used a variety of texting and Facebook to try to keep everyone informed. The issue is that we couldn’t keep up with everyone. That’s when we discovered CaringBridge. What is CaringBridge? CaringBridge is a website that is used to share your medical journey. […]
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The pursuit of happiness and choosing joy
Week 18: Blessedness Key verses Matthew 5:3-10 (NIV) Blessed are the poor in spirit, for theirs is the kingdom of heaven.Blessed are those who mourn, for they will be comforted.Blessed are the meek, for they will inherit the earth.Blessed are those who hunger and thirst for righteousness, for they will be filled.Blessed are the […]
