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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Addictive happiness in all circumstances
Week 9: Finding happiness Key verses Psalm 1:1-3 (NLT) Oh, the joys of those who do not follow the advice of the wicked, or stand around with sinners, or join in with mockers.But they delight in the law of the Lord, meditating on it day and night.They are like trees planted along the riverbank, bearing fruit […]
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Who do you serve? You can’t split loyalties
Week 8: Jesus and David Key verses 2 Samuel 7:12 (NLT) For when you die and are buried with your ancestors, I will raise up one of your descendants, your own offspring, and I will make his kingdom strong. Philippians 2:9-11 (NLT) Therefore, God elevated him to the place of highest honor and gave him […]
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The impact of change – working with ALS
Originally published June 16, 2022, on Data on Wheels. I started this summary on LinkedIn. Check out that article here. I only used LinkedIn to introduce what is happening, if you’re interested in learning more keep reading. The blog and work impact First, I have to say thank you to my daughter Kristyna, who has been contributing regularly […]
