Living With Narcolepsy: Thomas Heckmaster’s Journey to Advocacy and Marathon Running

By Tana Bao MSN, NP, RN

Thomas Heckmaster is a 23 year old person living with Narcolepsy in the Denver area. He is an avid skier and works full time as a software engineer.

Like many people living with Narcolepsy, Tom has had to overcome several challenges to adjust to life with this disorder.

The Start of Tom’s Journey

Tom’s Narcolepsy journey started about two years ago while he was still in college. Although he was always a daytime napper, in 2020 as the pandemic started settling in, Tom states his daytime napping stopped being a choice. He had to nap. He spent up to three hours daily napping despite getting twelve hours of sleep at night. He recalls one time he needed to pull over while driving because he had such an immense need to nap.

Tom states the first time he found the napping to be truly concerning and potentially dangerous was during the winter 2020-2021 snowboarding season. He was riding up the mountain on a chair lift and fell asleep during the short trip up the slopes.

Despite the unsettling nature of this incident, Tom states he still didn’t realize how problematic his excessive sleepiness was. He simply thought napping—even on a chairlift unintentionally—was nothing more than a “bad habit.”

Soon after, in March of 2021, Tom started to experience cataplexy symptoms. This is what prompted him to seek help because buckling knees, blurring eyes, and shaking of the jaw were indisputable symptoms as opposed to the “bad habit” of napping.

He explained his symptoms to his girlfriend Isobel’s mother, a kidney doctor, who, after hearing his story, suggested the word cataplexy.

At its worst, Tom describes cataplexy episodes that involve full body collapses as frequently as once or twice per week. More moderate cataplexy for Tom is described as cataplexy attacks several times per day. When watching sitcoms like Modern Family, Tom can often find his head starting to fall forward with laughing. A simple yet particularly helpful intervention for him has been keeping a neck pillow close by to help support his head if a cataplexy episode catches him off guard while watching TV. He also keeps one in the car in case he falls asleep.

The Diagnosis

Shortly after learning about cataplexy, Tom looked up his symptoms online and realized that between his chronic napping, long sleep duration, and cataplexy, he very likely did have Narcolepsy. A few months passed from there until Tom received his formal diagnosis of type I Narcolepsy in August of 2021.

Looking back, Tom knows he is fortunate he had a quick turnaround time to diagnosis, likely because of not only having significant cataplexy but also because of his proximity to a doctor that knew what cataplexy was.

Soon after diagnosis, Tom and Isobel stumbled upon Wake Up Narcolepsy. He enjoyed learning from their educational podcast and also found the support groups incredibly helpful.

Tom has also made literal strides to give back to the Wake Up Narcolepsy community. In April of 2023, Tom ran the Boston marathon and successfully raised over 11,000 dollars to put towards accelerating Narcolepsy research. Thank you, Tom!

He states running with and meeting others with Narcolepsy was a tremendously enlightening experience as it’s not every day he can connect in person with someone on such a core level. Finding others to lean on, whether that be family and friends or other people with Narcolepsy, has been pivotal in helping Tom along these past few years.

Tom’s Involvement with WUN

He encourages people to continue to raise awareness for Narcolepsy. You can check out Tom’s TikTok and Instagram @sleepingtom5 where he portrays his cataplectic episodes to help educate others on what this looks like.

He also hopes to continue to dispel the notion that people with Narcolepsy sleep well at night or sleep well at all. Although people with Narcolepsy are excessively sleepy, the sleep that they get is actually very fragmented and nonrestorative [1]. It is a paradoxical predicament that is not readily obvious, especially to people that don’t know what Narcolepsy is.

He states that regarding Narcolepsy, “the best thing to do is to talk to each other and talk to others because it’s a misunderstood disease because it’s not discussed.” – Thomas Heckmaster.