Our ALS Journey

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!

Latest Reflections

I created a thing…12 months ago

I created a thing…12 months ago

September 2026 marks one year since I launched Data on Wheels ~ ALS! It has been a busy twelve month…

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The Lord’s Supper

Week 35: Communion Key verses John 6:53 (NLT) Jesus replied, “I am the bread of life. Whoever c…

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Four conflicts of worship

Four conflicts of worship

Week 34: Worship Key verse John 4:24 (NLT) For God is Spirit, so those who worship him must worship …

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