Coaches and school district staff make a difference for student living with narcolepsy
Napping during practice is usually frowned upon, but it’s an everyday activity for a local student athlete at Morris Area High School.
Senior Aaron Jones has participated in football and wrestling throughout his high school career, but his participation became a challenge when he was diagnosed with narcolepsy a little over a year ago.
Narcolepsy Awareness Day is Saturday, March 12. It’s also known as Suddenly Sleepy Saturday, for good reason.
Narcolepsy is a neurological sleep disorder, which involves irregular patterns of Rapid Eye Movement (REM) sleep and significant disruptions of the normal sleep/wake cycle.
According to the National Sleep Foundation, the main features of narcolepsy are fatigue and cataplexy – an episode in which strong emotion causes a sudden loss of muscle tone.
“I experience almost entirely Cataplexy-associated episodes rather than the daytime sleepiness that is more common,” Jones said. “That is why it is difficult to participate in sports. Overwhelming emotion or strenuous physical activity can cause me to have an episode.”
For Jones, the worst part of his disorder is not knowing what might happen during an episode.
“An episode can be something be as simple as laughing, being scared, or even just being excited like when I’m watching a state wrestling match,” he said. “I often get a surprise episode and sometimes have different versions of my symptoms. It’s never not scary.”
Other symptoms include excessive daytime sleepiness, sleep paralysis, hallucinations, and even memory lapses. Jones said that he has lost his memory for about a half hour during one episode, but it’s more common to lose the ability to speak.
Life inside sports
By being involved in sports, Jones had to become his own monitor. He had chats with both his football and wrestling coaches, as well as Morris Area/Chokio-Alberta’s athletic trainer Mary Bellmore on how to maximize his playing time, but in the end, he had to be honest with himself about what he could or couldn’t do.
“It was hard to take myself out of a football game, but it was for the team and because I knew the coaches were trusting me,” Jones said, who played about three to four minutes on special teams and defense in his senior season. “I got more out of scout defense. It seems cheesy, but for me, practice was enough.”
Head football coach Kevin Pope said he was initially concerned about what Jones’ participation on the team would look like.
“He expressed a strong desire to play and be a part of the team. I shared his desire, but to be truthful, I was a little hesitant about what his participation would look like. Aaron and I had several very real and grown up conversations about it,” Pope said. “Aaron would experience an episode where he would ‘take a little nap’ during practice a couple times a week, but it was never a distraction. He was very good about knowing when he needed to step off the field. It was interesting at times, but Aaron deserves a ton of credit with how well he managed himself and the situation as a whole.”
Wrestling was a greater challenge because of the fast nature of the competition. Jones’ medication isn’t able to metabolize fast enough to keep him going, so he’s only been able to practice about 25 percent of the time.
“Football relied on me planning when to take my medication, whereas wrestling requires me to know when to take breaks in between drills. I now take a 15-20 minute nap in the middle of each practice to allow my medication to start working again,” Jones said.
Jones recorded two forfeits this season on the wrestling mat, enough to earn a varsity letter that head wrestling coach Troy Ostby said was well-earned.
“I think he felt that it was out of pity, but it wasn’t. He works just as hard as the next wrestler, but he just can’t go as long, time wise. He deserves those two wins,” Ostby said. “When he couldn’t wrestle, he still wanted to be involved, whether it was filming, stats, or just encouraging his teammates to wrestle hard.”
For Jones, the chance to continue participating in athletics, despite the risks, helped make his diagnosis bearable – his teammates and coaches pushed him to get better instead of simply surviving.
The best feeling in the world is having a coach look at you as an athlete rather than a narc,” Jones said. “They’d push me to go as hard as I could and then when I couldn’t go anymore, they’d pick me up, literally, and take care of me. No questions asked. No complaints. It was just something we dealt with together. Having a bunch of brothers who will compete with you, hold you up, and then laugh with you when it’s all over is better than any medication.”
Life outside sports
Along with football and wrestling, Jones is also active in Business Professionals of America and is enrolled full time at the University of Minnesota, Morris through the Postsecondary Enrollment Options (PSEO) program.
He has a formal plan with the Office of Academic Success as people with narcolepsy (PWNs) are covered under the Americans with Disabilities Act. He is also working on a 504 plan for the high school, which would remove barriers to learning for students with learning and attention issues.
“My personal accommodations only really amount to longer time on tests because I often fall asleep during them. I also have access to lecture recording software,” Jones said.
Jones attended the Narcolepsy Network Conference in Minneapolis last year, which moved him to recognize his fantastic support system he’s had at Morris Area. It’s something a lot of PWNs need, but do not have.
“I met many people of all ages who all shared similar stories – long periods of time without diagnosis, uneducated doctors, misunderstanding bosses and friends, and difficulties accessing treatment even after diagnosis,” Jones said. “Kids are especially at risk. I was one of just three athletes at this conference. Many spoke of teachers who coined them ‘lazy kids’ and didn’t believe they actually had a disorder. There were also both adults and kids who spoke of long-term depression and near suicides.”
In the months between his first episode on Aug. 29, 2014 and his diagnosis in January of 2015, his primary care came from Morris Area High School nurse Karen Folkman. Folkman would take detailed notes, stay with Jones through his episodes, and even helped push him and his family to the right doctor to get diagnosed.
“Her commitment was astounding. If more PWNs had access to a Karen Folkman, their lives would’ve been much easier,” Jones said.
Once Jones was diagnosed and back in sports, his support system grew. Mary Bellmore helped Jones self-evaluate and watched out for him at games, which gave his parents comfort. The same goes for Athletic Director Mark Ekren, and both coach Pope and Ostby.
“They could have easily sent me packing, but none of them did,” Jones said. “I am a liability and pretty unpredictable. Yet, somehow all of them put their fears aside and focused on me getting the most out of high school sports as possible.”
“I felt that these five individuals represented what so many PWNs need, but can’t find. An adult that takes their job above and beyond the call of duty. I can’t thank them enough,” Jones concluded.