June 2024
by Scott Kicklighter

A huge thank you to Team Gleason for providing this adventure for Scott, my husband, and me.

11 years ago, all I knew about Lou Gehrig’s disease is that he had one – that’s all. Fast forward one year and my 19-year-old baby was being diagnosed with ALS.

We have chosen to remain his caretakers until the end. He has always wanted to fly in a plane (his favorite part, not so much mine), and loves to sit on the porch. Leslie, who owns John-Boys Place has thought of everything! There wasn’t anything that we did that he couldn’t do.

As caregivers to folks with ALS, we go 24 hours a day while trying not to leave our other kids, homes, and obligations out. After a few years (Scott is an anomaly – this is year 10 with his diagnosis and he has progressed rapidly this year), you get used to little sleep, brain fog, never sitting down and the list goes on. You forget how to relax.

I’d suggest you make the trip. Maybe make it in the spring or fall, because it can get hot, but make it. Everything you could need is there and your person with ALS can participate in most of it. We fished from the shore, played games on the screened porch, and had the best time watching the birds! We reconnected not as caregivers, but as a family. My only regret was his sister was at the law enforcement academy and couldn’t be there with us. Thanks Team Gleason and John-boys place for a great place to wind down and just “be.”

OH! And eat at the Buckboard restaurant. You can thank me later!

Scott is just starting to use his Tobbi, and his mom passed along this message from him:

He was able to get out that his favorite parts were not having to go to therapy, and just being able to sit on the porch and watch the birds and fish in the lake. He loved feeling safe and not having to navigate steps (he feels unsafe despite there being two of us who lift and move him). He was also able to participate (and cheat!) in card games using a special block that held his cards. He just loved being included! No sitters while we went sightseeing and Leslie thinking of everything. It was wonderful to see how happy he was! He slept longer and deeper than he had in year

Team Gleason would like to thank John-Boy’s Place for their continued support of those living with ALS.