Cross-Country Bike Ride Raising Awareness About Peripheral Neuropathy
/By Madora Pennington, PNN Columnist
Gregory Maassen, a 55-year-old with debilitating peripheral neuropathy, sits in a tent in Ely, Nevada charging his e-bike, drone and cameras. He has been e-biking from Washington DC to San Francisco to raise funds for The Foundation for Peripheral Neuropathy, collecting video for a documentary along the way.
When Maassen was at his most ill, a 3,400-mile solo bike trek would have been only a fantasy. But he dreamed of such things when he was bedbound. Hope, he believes, is a key to improving.
Maassen had been a successful international businessman, until his life changed in 2018 when he found himself covered with tics while working in South Africa. He became sick with flu-like symptoms and later a burning sensation all over his body.
Finding no cause or cure, doctors told Maassen his physical symptoms were from stress and to get psychiatric help. Arguing with them was useless.
“If you are diagnosed as psychosomatic, you don’t get the right care and treatment,” said Maassen, who was unable to work, slept 18 hours per day and sank into a deep depression.
Eventually, doctors at Johns Hopkins Hospital in Maryland took tissue samples from the skin on his legs. They could see the nerve damage that was causing the consuming, burning pain. Once diagnosed correctly with post-infectious small fiber neuropathy, Maassen was started on medications that helped.
Damaged Nerves
According to the National Institutes of Health, there are more than 100 kinds of peripheral neuropathy, a type of nerve damage. Peripheral neuropathy affects 20 million Americans, but some believe that estimate is low because many patients are misdiagnosed or not tested for neuropathy at all.
Nerves are the network cables of the body, allowing the body to communicate with itself. Some nerves control physical movements, others sense input such as light, touch, temperature and pain, and some regulate automatic processes like breathing and digestion. Damaged nerves transfer incorrect signals or may interrupt them altogether.
Physical injury, infection, auto-immune disease, cancer, and diabetes are some common causes of peripheral neuropathy. Treatment varies depending on where the damage is and the symptoms. Exercise is often recommended because the increased blood flow nourishes nerves and strengthens muscles.
When Maassen’s doctors recommended exercise, he tried returning to his passion for hiking, but it proved too strenuous. Not being able to hike added to his depression.
Cycling at the time seemed impossible because the area around him was too hilly. He tried swimming, but the chlorine aggravated his symptoms. He was so weak he could not finish even beginner lessons of Pilates he found on YouTube.
Because he is Dutch by birth, cycling is part of Maassen’s culture. It was never a passion of his, just what many people in his native country do. Maassen turned to an electric bike, or e-bike.
Rather than relying solely on the rider’s strength, an e-bike has a small motor that boosts the rider’s pedaling power. Hills and distances can be manageable, even for a debilitated person.
At that time, there was little Maassen could physically do for himself. His wife provided what he describes as “a marathon of support.” But it was also a lonely time for him, as it is for many with chronic illness.
“When you are endlessly sick, you lose your support,” Maassen says. “People don’t want to listen to you. Only your closest friends will continue to reach out.”
Maassen’s e-biking gave him small adventures that restored his fitness, and eased his depression and loneliness. Running an errand or visiting a friend made his brain active and happy by registering something positive. Later, he began kayaking. Very slowly, he rebuilt his strength. Within a few months, Maassen was able to go on long rides. He resumed working the next year and started an e-bike club.
To raise awareness for peripheral neuropathy and encourage the sport of e-biking for all, Maassen embarked on his e-bike journey along the Lincoln Highway on April 2nd of this year. So far, he has raised over $120,000. He has another dream: to establish this route as a new transcontinental cycling route for e-bikers. Unlike cyclists, e-bikers need electricity to re-charge their bikes.
Maassen is an FAA-certified drone pilot. He is using his drone to film, sometimes as he rides. He does interviews on stops and rest days and gets more footage for future documentaries about e-biking and this route.
Maassen still has bad days where he suffers burning pains “like crazy,” but he forces himself to do things and not focus on the pain. While on this journey he makes a conscious effort to fully engage in the moment, relishing the beautiful scenery and the warm people he meets. He stays in campgrounds or cheap hotels to keep the costs of the trip low. His favorite meal is a spicy Italian Subway sandwich.
Maassen recently became a U.S. citizen, but he travels with a souvenir from his home country – Dutch wooden shoes, which helps to start conversations. He still feels sorrow at the horrible period before he was correctly diagnosed. He hopes his ride will contribute to education and awareness.
“Maybe people will recognize the tingling, burning, the sinking into depression. I hope they will go to the Foundation’s website or maybe see a neurologist,” he told me. “With proper support from the medical profession, understanding your limitations, and making lifestyle changes you can make a difference in your life.”
To donate to the Foundation for Peripheral Neuropathy, click here. For updates on Maassen’s ride, click here. To donate to the E-bike Across the U.S. campaign, click here.
Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies.
