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

Love others is the goal, not being loved

Love others is the goal, not being loved

Week 33: Love   Key verses John 3:16-17 (NLT) For this is how God loved the world: He gave his …

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Creative Pursuits Fall 2026 Catalog is available now!

Creative Pursuits Fall 2026 Catalog is available now!

The fall catalog has been released for the Creative Pursuits program from the ALS Association. I am …

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Triple 5’s in 2026

Triple 5’s in 2026

This year I hit two milestones in my life. I turned 55 and I’ve lived with ALS for five years. Thus,…

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