The Latent Particle of MS
Written by Gary Pinder
Edited by Lisa Pinder
Meriam Webster, the authoritative American Dictionary of the English Language, defines a “spark” as a “small particle of a burning substance thrown out by a body in combustion or remaining when combustion is nearly completed.” If you live with Multiple Sclerosis (MS) you can relate to being that “small particle of a burning substance thrown out by a body in combustion.” Our immune systems have decided our myelin is the enemy so it must be eaten up and thrown away with our lives combusted as a result. What our immune systems do not know though is that a spark can also (per Meriam Webster) be a “a latent particle capable of growth or developing.” Two (2) associates of Run A Myelin My Shoes (RAMMS) are definitions of those latent sparks, growing and developing in ways not envisaged by the immune system.
Nevada resident Derek Stefureac was diagnosed with MS in 2011 at the age of thirty-nine. MS began when he had an attack where half of his body became numb and rigid. The episode lasted about 90 seconds. After seeing several doctors and having many different tests performed, an MRI showed that he had lesions on his brain and spinal cord. A diagnosis of MS was made.
When he was diagnosed Derek had zero experience with running and smoked regularly. The diagnosis of MS was his latent spark. It changed his life. He gave up smoking and began running. He ran for only a short distance at first and noticed that after about a mile his leg was becoming weaker which caused him to limp. Rather than give up, he just continued running further and further. After a while it was not until the second mile that he began to limp, then it was not until the third mile.
The more he ran, the less he experienced leg weakness. Then one day eight years after diagnosis he thought “hey, I’m going to sign up for one of those races where you get a number put on you.” His first event was a half marathon near his home. He had to walk the last few miles, but he finished…and then registered for another half-marathon the next month. With a mile to go in this second race, his leg began to feel weak, and he needed to drag his foot the rest of the way. “I could see the finish line, and I did not want to let MS stop me. I knew I could keep going.” Resulting from the foot dragging, he crossed the line with a hole in his shoe through which his toes could be seen.
Despite the leg dragging and the hole in his shoe, the regular running continued until after 30 half-marathon events he no longer experienced leg weakness. Then, the experience of running marathons entered his life. The first marathon was the 2018 Las Vegas Marathon. A few marathons later, Derek registered for the 2021 Antarctic Ice Marathon. This event takes place on Union Glacier on mainland Antarctica. It consists of four (4) 6.5-mile laps, run completely on snow and ice, at an elevation of 3,000 feet with a typical race day temperature of -4°F (-20°C). “Going to Antarctica to run a marathon felt epic, and nobody could tell I had MS. I wanted to do this as a ‘runner’ and not someone with MS,” says Derek.
During his adventure in Antarctica, Derek met several people that had completed a marathon on every continent. After hearing of this feat and having completed the most difficult continent to get to (Antarctica), he set the goal of running a marathon on every continent which he achieved in a three-year period. In April of 2022, Derek traveled to Paris, France to complete his European marathon. This was followed up by the Volcano Marathon in the Atacama Desert in Chile (South America) in November of 2022. The following year, Derek traveled to Nepal to participate in the highest elevation running event on the globe the “Everest Marathon.” Starting at Everest Base Camp (17,598 feet), it concludes 26.2 miles later at the village of Namche Bazaar, a descent of 6,312 feet.
“I could see the finish line, and I did not want to let MS stop me. I knew I could keep going.”
With marathons on the continents of North America, Antarctica, Europe, South America and Asia now completed, Derek had just two more continents to go. Next up was The Big Five Marathon in Africa. This race was completed on a game reserve (where he was joined by his daughter Madison who ran the half marathon event). Finally, in June of 2024, Derek travelled to Australia where he ran the Brisbane Marathon.
Along the way, as an ongoing motivator, Derek has retained every syringe from his daily and now three times per week self-injections of MS medication. He retains them in a 5-gallon container. Madison was 8 years old when he was diagnosed and when she became old enough, would on occasion help with an injection. Madison is very proud of how her dad has managed and coped with his condition.
Derek learned about RAMMS resulting from a patient story published about him by the Cleveland Clinic. Cheryl Hile saw this story and established contact with him.
After accomplishing the goal of a marathon on each continent, Derek set goals to become faster and run farther. Last year, Derek qualified for the Boston Marathon which he will run in 2026. This year, he is a part of the MS Run the US Ultra Relay (an annual coast to coast relay in support of MS). For his segment of the relay, he will run 6 marathons in 6 straight days across the state of Nebraska.
The second RAMMS latent spark developing in ways not envisaged by the immune system post MS diagnosis is Ryan Weller. Ryan first experienced MS in 2000 during a bus ride to work. His left leg and arm went numb, which lasted about an hour and then went away. A week later those sensations returned. And then again, a month later. In January 2001, he picked up a glass of water which he dropped. A week later he was diagnosed with MS.
Ryan’s family had experience with MS. An aunt of his was diagnosed with MS in the 1970s. She progressed to a wheelchair very quickly after diagnosis before passing away at a relatively young age. Ryan knew he had to do something different than his aunt, to change the course of his MS. He began looking at life with a whole new perspective.
Ryan knew he had to do something differnt…
Ryan did not run prior to MS entering his life. Exercise was not part of his life, apart from the occasional social game of racquetball. With the diagnosis of MS and to follow an emerging life mantra of living life with no regrets and to follow a different path than his aunt, Ryan decided to begin running to help manage the condition. He entered and completed his first half marathon. He then entered and completed a marathon. He then found friends who participated in ultra marathon events and joined them. He has completed an unsupported 75-mile run. He has participated in events on the Pacific Coast trail of 30 hours which go through the night. He has participated in Meat Fight events (an organization dedicated to enabling those with MS to participate in endurance experiences), including a half ironman and a hike from Rim to River to Rim of the Grand Canyon. He has run sections of MS run the US. He has completed the Pikes Peak Ascent (a half marathon from the base in Manitou Springs) to the 14,115-foot summit of Pikes Peak in Colorado). He has completed the Manitou Incline Hike in Colorado (2,744 steps made of railroad ties).
Along the way, Ryan searched on “marathons and MS” and learned about Cheryl Hile running her marathon on every continent and was able to connect with Cheryl via email. Ryan was one of the first members of the RAMMS team and has participated every year since it commenced in 2018. As they live close in the Pacific Northwest Ryan will meet with Cheryl and Brian Hile occasionally for a beer and a run 😊
Ryan’s MS journey so far has seen ups and downs. His memory is not what it used to be, so he has needed to become a list person. One of those to do lists is a list of major endurance events to participate in. He always keeps something on his major to do list as a reminder of his need to keep moving on a regular basis. He takes part in major events for those who cannot move, who cannot run, to let them know others are thinking of them. On Ryan’s major event to do list over the next few years are to run a marathon or two each year, run a marathon on every island in Hawaii, to always stay active, find fun things to do with others living with MS and to encourage the newly diagnosed to keep being active for as long as they can.
None of the events Ryan has done post MS diagnosis were even imagined before his body self-combusted in 2000 with MS as the cause. He has become another definition of that latent spark post MS diagnosis embodied by many of the Warriors and Heros of RAMMS.
Many other members of RAMMS, while following the same basic common theme of MS, have come to this team via this secondary theme of being that latent spark developing new habits of life not envisaged either by ourselves or our immune systems. For some, it is rediscovering old habits and returning to running in the form of a belated latent spark.
According to the National MS Society (NMSS) 2.9 million people live with MS worldwide, with one million in the United States. This equates to approximately 0.03% of the global population living with MS.
Approximately 1.1 million people globally complete a marathon every year. Around 0.05% of the US population has completed a marathon. Less than 1% of the world’s population will ever complete a marathon. In 2019 there were approximately 2.1 million people who participated in half marathons. It is estimated that 10 to 15% of the population has participated in a 5k event and about 15% of the population run regularly utilizing different forms.
Around 50% of people with MS may need walking assistance or be wheelchair-bound within 15 years of diagnosis. There are many latent sparks who are MS Warriors on this RAMMS team. Many became latent sparks to shift the bell curve of this scary MS outcome in their favor. Becoming a latent spark does not always shift that bell curve. For many, MS is just overwhelming, and no amount of exercise or medication options is going to shift that curve.
A small number of people living with MS still able to move and to run have found RAMMS. That small percentage of the global population who have completed marathons, half marathons and 5ks becomes a micro population within the MS community. We participate as our way of giving MS the middle finger when we cross the finish line of a 5k, half marathon or marathon. We do not care about our finishing time. Just finishing is our victory. And fuck it. It’s fun being a part of this team.