"All of a sudden, the rug gets pulled out from underneath you": Jules van Dongen describes sudden dystonia nightmare, cycles 4,800 kilometers across America to raise awareness

For Jules van Dongen, his professional darts career ended just as it was beginning to take off. The Netherlands-born darter, who now lives in Parkville, USA, lost his hospitality job during the COVID pandemic in 2021 and decided to turn his biggest hobby into his profession.

After two successful years on the American darts circuit, during which he captured multiple titles, Van Dongen took the next step. At Q-School in 2022 he secured a Tour Card. The highlight followed in early 2024 with his appearance at the World Darts Championship at Alexandra Palace.

When he lost his pro status later that year, Van Dongen fought his way back through Q-School. But behind the scenes, a much bigger issue was unfolding.

Van Dongen noticed he was increasingly struggling to hold his darts. "Initially, I thought it was a grip issue,” van Dongen said to The Kansas City Star. “I twist the dart onto my thumb before I throw it, and I couldn’t twist it anymore. My thumb basically wouldn’t cooperate.”

What began as a minor discomfort turned into a persistent problem that haunted him for years. Some colleagues suspected he was dealing with dartitis, a mental block that prevents players from releasing the dart.

Van Dongen mainly wanted to know what was really going on. “I went to an orthopedic specialist, got physical therapy, acupuncture and hypnotherapy,” van Dongen said. “I worked with a sports psychologist. I did nerve studies and MRIs, just nothing seemed to help. And I didn’t get any answers.

After countless tests, Van Dongen eventually found the answer himself during a late-night internet search. He stumbled upon task-specific dystonia, a neurological disorder that causes muscle cramps during specific actions.

In his case, the pinching motion needed to hold a dart triggered uncontrolled muscle contractions. A visit to a neurologist confirmed the diagnosis shortly thereafter.

The relief of finally having an answer quickly gave way to a harsh reality: there is no simple fix. “Acceptance was the hardest part,” he said. “I felt my career was on the rise. All of a sudden, the rug gets pulled out from underneath you.”

The diagnosis effectively meant the end of a darts career that Van Dongen had built over ten years. “Once I knew my career was over, I just fell into this gap of: What am I going to do with my life?” he said. “I needed something. I needed a purpose. I needed a goal.”

He found that new goal on the bike. Cycling had been an important hobby for years. To stay fit during his darts career, Van Dongen regularly went on long rides and even completed three Ironman races.

That passion sparked an ambitious plan: to ride across the United States from coast to coast. From Santa Monica, California to Yorktown, Virginia, a journey of over 4,800 kilometers.

When he presented the idea at home, his wife Linda’s first reaction was unsurprising. "She said, ‘You’re crazy. It’s not happening," Van Dongen said. “The next day she said, ‘OK, what do we need to do? What do you need? What are your expectations? How are we going to do this?’ She was on board fairly quickly.”

The project was named Pedals and Points and grew into much more than a personal challenge. Van Dongen wanted to raise awareness for dystonia, a condition that, according to figures from the Cleveland Clinic, affects nearly 300,000 Americans in various forms.

Along the way he visited darts venues, played exhibition matches with local players and documented everything on social media. He also worked on a documentary about his journey.

“I noticed that sharing everything I went through helped a lot of people,” van Dongen said. “I just wanted to give people an idea of how big (dystonia) is and how many people it affects.”

After weeks of preparation, Van Dongen set off from Santa Monica with a cameraman and a driver. He soon discovered the challenge was bigger than expected.

“The first day went well, but then Days 2, 3 and 4, a lot went wrong,” van Dongen said. “My GPS would say, ‘Go left here,’ and it would go straight into the bushes. And I was like, ‘I’m in over my head here.’”

What followed was a grueling 76-day slog. In California he had to detour around road closures via unpaved mountain trails. In New Mexico he rode hundreds of kilometers on highways as trucks thundered past at high speed. In Kentucky he kept aggressive wild dogs at bay with pepper spray.

He also had to contend with fourteen punctures, a tally he later even commemorated with a tattoo. The days were spent cycling for hours and sleeping in an RV, with water and electricity carefully rationed.

The end of the journey was anything but spectacular. When Van Dongen reached Yorktown, it was pouring rain. His family sheltered in cars, and only one journalist was present to take a photo and ask a brief question. After that, he was left alone with his bike.

Before he left, he took one symbolic photo by placing his bike in the Atlantic Ocean. In the end, the finish turned out not to be the most important part of the trip. Along the way, Van Dongen rediscovered something he had lost during his pro career: joy in the game.

During stops in Missouri, Kentucky, and Virginia, he played relaxed matches with local darters, free from the pressure of rankings, prize money, or results.

“I was always so hypercompetitive, and playing was my job. Then on this trip I played just for fun,” he said. “I definitely learned how to have fun again playing darts and not just have my mood be dictated by results.”

Although his right hand is still limited by dystonia, Van Dongen has not completely given up on his dream. The condition affects only his right hand, which led him to start a remarkable new project: learning to play darts left-handed. He hopes to eventually become the first professional darter to compete at a high level both right- and left-handed.

After nine months of training, he realizes it will be a long road. “You’re learning everything from scratch,” van Dongen said. “I think it would take years for it to really come to terms with my opposite hand because there’s literally nothing I could do with my opposite hand.”

Beyond his sporting goals, Van Dongen continues to raise awareness of dystonia. Through Pedals and Points, he has already raised 14,500 dollars for the Dystonia Medical Research Foundation.

“With dystonia, a lot of people still don’t understand. I mean, it took me a long time to understand what it actually was,” he said. “People don’t really know what they’re donating for, and I think that’s the challenge.”

“I noticed for a lot of people the common theme was that everyone was misdiagnosed for a year, two years, even three years,” he said. “I hope through raising awareness that we can spread the word and get people on the right track.”

Looking back on recent years, Van Dongen points to two factors that kept him going. The first is the support of his family, friends, and the darts community. Above all, his wife Linda played a crucial role as he chased his dream on the international circuit.

“They financially supported me, and they backed me 100%,” van Dongen said. “It’s for people like that. I want to prove that I could still do it, and that’s my hope, left-handed.”

The second factor is his relentlessness. The same drive that once made him one of the best darters in the United States now fuels him to start over, cycle across a continent, and refuse to let his limitations define what he can still achieve.

“I have to have something to strive for in life,” he said. “Things could be so much worse, even for me. It’s not nice, but I’m still healthy, and I’m still here.”