Monday, September 15, 2025

The Aftermath of Bike MS

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Direct to our Bike MS campaign: https://mssociety.donordrive.com/participant/Rogue

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When I woke in the morning and tried to roll over, everything hurt. Pain, numbness, and tingling were an indistinguishable blend of reminders that my disease would never stop. Nor would I, so I fought my way out of bed to see if the day’s issues would improve with activity or if I was just going to have to live with them. I aborted my first attempt to stand when that sense of vertigo threatened to send me falling forward. Every reminder of my challenges with balance, every time I fall and smack my head onto the ground (like I did the day before), is my MS blaring its declaration of how it will never quit. Nor will I, so I took a moment to get my bearings. I stood tall on the third try.

“It’s going to be a long day,” was the only thing muttered before I dressed and shuffled into the kitchen. That was Saturday. One cup of coffee later, I made my way outside and started pedaling for 2025’s Bike MS–Kevin’s Version.

On Sunday, my morning routine of ailments was pretty much the same, with the added twist of having ridden 100 miles in my garage.

BEFORE

2024 was an emotional year, capped with my garage-bound century ride. Oregon Bike MS was a couple of weeks prior, but I waited until October 6. The date marked my 25th anniversary of leaving a Korean hospital with a report that included the words 다발성 경화증 가능성. The English translation read “possible multiple sclerosis.” I shared stories of the week leading up to and the following month. My posts were emotional, not particularly jovial, but they got the point across in the only way I knew how.

This year is lighthearted and festive! Yes, I will continue to pepper my report with the harsh reality of multiple sclerosis. It has to be this way because everything in my life reeks of MS.

2025 started with Garage Dayz t-shirts.

I’m not going to lie. Seeing long-time friends post pictures of themselves wearing a t-shirt with my image on it was pretty cool (in a surreal way). Sitting in a bar, enjoying some post-ride beer and food with Jamie, friends, and family, was even more bizarre. We were all wearing shirts or hats sporting my Garage Dayz image, as well as Rogue’s and my Never Stop… Never Quit… For them handwriting! Here’s a recommendation: if you get the opportunity to sell people apparel emblazoned with your picture and handwriting, do it. It’s cool. The fact that 100% of the money earned from the sale of those items goes to our fight is even better.

DURING

I pedaled for 7:34 over the course of 9 hours. As my recumbent trike trainer crossed the virtual finish line, a part of me wanted to keep going. Every joint in my body hurt, but I knew the pain would spike when I stopped and tried to stand. Of course, the pain would get worse if I kept cranking away. And that is a perfect recap of my fight.

If I stop, I’m going to suffer. If I quit, I’m going to endure setbacks.

But…

If I keep going, I’m still going to languish in the pain of multiple sclerosis. It will probably get worse. But…

The only way to overcome the devastating effects of multiple sclerosis is if I Never Stop… Never Quit…, For them.

This ride was by far the greatest challenge of my 23-year Bike MS history. My mindset, however, was the most significant change. My 2025 goal is to spotlight Bike MS as a pure celebration of everything I stand for in this fight. And so, the rest of this report (the rest of this entire season) will be highlights of how and why I am celebrating. My MS will interrupt with stories of the pain and damage it yields, just like it does throughout every day, but my resilience will keep splashing that shit-eating grin on my face and into my words.

At 5:55 AM, the trek started in (almost) pitch black. I say ‘almost’ because my 2025 setup included multicolor lights flashing from my Super Bass Jobsite Speaker paired with my iPad. Motivational music, movies, and random TV shows kept me entertained throughout the day. My straight, slight incline was not a bike ride through the lonely, winding roads of Western Oregon. This scene was cush, with a garage full of motivation and mementos. Old bike MS jerseys hanging next to various fitness equipment and bikes; mementos from my Army days, including my D Troop 1-6 Calvary guidon, my old SPH-4 flight helmet, and the black powder pistol from one of my three consecutive years as Top Gun with 3-229th Aviation (Attack).

The garage floor was lined with purple shag carpeting, leftover from Rogue’s room renovation. Old walkers and canes rested next to signature wine bottle cases. Scattered around the bike were bottles of water, an emergency kit (thankfully, not needed), and fans to keep the garage from getting too stale. I got off my bike once at the 42-mile mark. It is slow and painful to climb in and out of my recumbent (not to mention dangerous), so I just stayed there for the other three breaks. Good thing I had my trusty pee bottle used to help manage my multiple-diverticula-damaged bladder! Blaring music, a dystopian assortment of random “stuff” strewn around an already cluttered garage, with the mix of a hundred miles of sweat and pee breaks wafting through the air. I think next year I’ll sell tickets to the event…

I needed every distraction. In hindsight, I could have used more. There’s a normal level of MS pain every day. Muscles that don’t work the way they used to, or work at all, but still throb with reminders of their uselessness. Other muscles have to compensate, which puts a strain on them as they pull joints in unintended directions. Damage from past falls left me with permanently torn ligaments and muscles. My fall the afternoon before the bike ride left me with a throbbing head, swollen elbow, and bruised ribs.

That level of pain was my starting point. The dysfunctional muscles were pulled and stretched against their will. The good ones carried two or three times the effort of my ride. Joints without the correct layout of ligaments and muscles cracked in ways joints should not crack, especially not for 7:34 hours. My head hurt. My ribs hurt. My elbow felt okay!

The best part was the fact that the grin I mentioned earlier (the shit-eating one) never left my face. My ride was nothing but a celebration of the fact that we are getting closer to finding a cure for this wretched disease. Plus, I had donuts! My motivation was so high throughout the day that I wasn’t hungry at all. But, did I mention the donuts? You don’t need to be hungry to eat donuts. Three delicious glazed treats from Sesame Donuts!

AFTER

And that was Bike MS–Kevin’s version. From around 6 AM to 3:15 in the afternoon, I smiled through 100 miles of painful pedaling. I texted with Rogue, talked on the phone with my mom, and had a visit with Jamie. I watched the new Superman movie (meh) and rocked out to tunes. I posted the few videos I recorded to social media (they are now on my YouTube channel under the 2025 Garage Dayz playlist). And of course I had donuts. Not a bad way to spend your Saturday morning, huh?

When the energy of the ride ended, all the MS pain rushed back. It took about 25 minutes to get off my recumbent trike. My left ankle, the one with muscle loss and damage, swelled to about twice its size when I finally was able to remove the bike shoe. It hurt even to touch, let alone try to stand and put weight on it. In some awkward acrobatic move, I managed to lift my body out of the bike and over the right tire. Please don’t tell Jamie or my mom (they will get mad I did not mention it), but I crawled back into my house and stretched out on the floor for about 10 minutes. Finally able to stand on my other leg, I somehow managed to get into the bathroom and into a hot shower. When circulation finally returned, the swelling dropped off almost completely. By the time Jamie arrived, I could put weight on it. Remember, shhhh! Keep that part a secret.

Showered, cleaned up, and over 8 pounds lighter, we headed out in our concert t-shirt swag for our post-ride celebration. I said a little thanks in silence that I didn’t fall getting in or out of my recumbent. As much as I am used to falling, it still hurts.

Every movement on Sunday was slow. Tired muscles had turned to soreness, and aching joints had become painful. I decided that cleaning up in my garage could wait until after brunch with Jamie’s family, and then grocery shopping. That grin remained on my face the entire time.

At night, when I sat at my computer to start writing, cleanup became less of a concern…

NEXT

It’s Monday morning. I was up until midnight writing my story, jarred awake at 4 AM by a flood of words I wanted to add and changes I needed to make.

Slow, but not as slow as yesterday. Painful and sore, but less so today. I tried to recount the number of times I had been cautioned over the past week.

“Just be careful. Don’t overdo it.” – I overdid it.

“If it gets to be too much, just stop.” – It got to be too much. I kept writing.

“I don’t know why you put yourself through that.” – That’s a longer story!

Why do I ride? The short answer is because I can.

The longer answer is because it’s one of the things I can still do. I can’t run. I can’t jump. I can’t ride a bicycle. I can’t even ride my recumbent trike out on the street. I used to be left-handed, but it really doesn’t work anymore. I can’t snap my fingers. I can clap. I can’t lift my arm over my head. I can’t button my shirt. I can’t hold a piece of food and cut it with a knife. I can’t lift a glass of water to my lips. I don’t have enough control and coordination to consider myself right-handed, but I switched a handful of those skills to the other side. If it requires two hands, I probably can’t do it. What I can do, I embrace with as much grit as possible. I plop my body down in the safety of my garage and pedal at a hard, constant pace until the measuring stick says I can stop. I sit at my computer and share my story into a microphone that transcribes the words for me. The next infection I battle could make everything worse. The next fall, accident, or other injury might raise my debilitation to a whole new level. If I don’t face that challenge, secondary progressive multiple sclerosis will continue to chip away at my form and function. When I can no longer do those things, I will figure out another way to do those things. That’s the first reason I ride. For me.

There are countless people globally who can’t do those things either. Many of them cannot do what I still can, even with the strange modifications I need. Some can’t stand; others can’t walk. Physical injuries will lead to more mobility impairments. Infections will compound current issues and create new problems. For too many, the trauma will blacken any hope they had for their future, creating another elevated suicide statistic in the MS population. Warriors in our community have told me how Never Stop… Never Quit… gives them hope, encouraging the same incessant push I share in my stories, videos, and posts. That’s the second reason I ride. For them.

Money. Donations. Pure and simple. If I never realized another improvement in my progressive debilitation, if I never received another bit of inspiring feedback, yet everyone I ever connected with donated what they could in support of our fight, I won. Donations will drive the funding necessary to develop treatments that improve the lives of those living with MS. The money funneled into research on candidates like tolebrutinib, a drug for treating non-relapsing secondary progressive multiple sclerosis (that’s me). Tolebrutinib has demonstrated a significant delay in disability progression. The FDA is scheduled to make an approval decision by September 28. There are dozens of other drugs under active research and development. The National MS Society provides funding and oversight to scientists, academic medical centers, and researchers. The goal to better the lives of those living with MS is merely a slice of the objectives the NMSS has in their overall vision of a world free of MS. Developing treatments in the lab alongside functional rehabilitative programs in our communities will improve lives until we find the secrets to halting progression, regaining what has been lost, and eventually preventing future onsets of multiple sclerosis. Two years ago, I spoke at the Oregon Bike MS program after Day 1 of riding. I admitted that I will never see a world free of MS because of the damage already done to my body. Rogue’s memories of my suffering mean that, even if we cure the disease tomorrow, she will never know a world free of MS because it is a part of her life. But I hope that she will look upon the child born without fear of developing this disease, who has never watched someone wither away after years of incessant suffering. They will live their lives in joyful bliss. That’s the third reason I ride. For them.

Like I said, lighthearted and festive.

Now, it’s time for me to focus on recovering my body so I can join my friends in McMinnville this Saturday and celebrate another fantastic event!

Thank you for the motivation and support.

With love,

Kevin


Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight for them!

 

Never Stop… Never Quit…®

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