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Scott’s Story

Site created on August 2, 2022

Welcome! If you're reading this, you very likely adore Scott Payton just as much as everyone else who has ever met him ( * a LOT, duh * ). Assuming that's the case, we are happy to welcome you to Team Scotty! This site has been created to share information and provide support to Scott as he faces his recent ALS diagnosis and everything that comes along with it. Please share it with all Team Scotty recruits we may have missed.

After months of a limp in his left leg and tingling on a couple fingers on his left hand, Scott's primary care doctor referred him to a neurologist. On December 8, 2021 an EMG test confirmed Scott's ALS diagnosis. After several months of keeping the news to a very small group, Scott has decided to let the cat out of the bag. In late July, Scotty made the move from Indianapolis back to the Bluegrass State and is now living with longtime friends, David Frederich and Cynthia Romanowitz, in Nicholasville (a Lexington suburb).

The questions asked by most people when they hear his diagnosis relate to how Scotty's doing and what the road ahead looks like. As of this writing, he is facing the diagnosis with his standard good spirit and optimistic nature. As he says "if you can't fix it, don't fret it." From a physical standpoint, any lifelong goals of teaching hip hop or running marathons have been set aside, but as we slide into August, most of Scotty's symptoms remain relatively subtle to others and involve minor mobility difficulties, muscle spasms, and muscle weakness.

As for the road ahead, any google search makes it clear that the anticipated ALS journey isn't as long as we would like. But until any further news is shared (which will happen here along the way), the default description of "many months, not many years" seems apt.

Scott has already faced the truth of it. Once ALS starts, it always progresses. There is no remission and there is no cure. As members of Team Scotty, we embrace his spirit of facing this thing head on and making the most of the time we have together.

As you know, Scotty Payton has never been the type to wallow or take a back seat. As Hunter S. Thompson once said, "Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!"

Between now and then, this page will offer updates and news. Whenever you can, you are encouraged to hop over here to share your own thoughts, memories, hilarity, wisdom, and heartwarming tear-jerking sentiments. As fellow members of Team Scotty, we and Scott are counting on it.

Newest Update

Journal entry by Cynthia Romanowitz — Apr 13, 2024

Good afternoon, FOS(friends of Scotty)

Well, folks. We are still at it. We have a few good caregivers but 24/7 care is not for the faint of heart!

Scott can’t really communicate well anymore. It’s even difficulty for his regular caregivers to understand him and we are having problems with the eye gaze machine that would allow him to communicate better so he is frustrated.

Visiting is still crucial to his well-being; now more than ever. Some of the more
faithful visitors have had to stop due to their own health issues so Scott has had fewer people out here recently. I realize it is hard to see a friend immobile and mute, but he is still aware with the same active mind you all know and love. I would encourage any of you that have not visited to do so now. He is nearing the end. You don’t have to stay a long time, don’t have to do anything for him, just visit, talk and tell him what’s going on in YOUR life or talk about favorite shared memories. We live 5 minutes past Brannon crossing so it isn’t too far. If you have driven to Nicholasville recently you have driven past our house.

I cannot tell you how long he has, but if you want to see him I suggest you come now. Peace, Cynthia

Read More of the journal titled "April 13, 2024"

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