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This was after receiving a diagnosis in 2018 for a condition that affects the nerves outside the brain and spinal cord, known as peripheral neuropathy. This condition causes pain, numbness, and weakness (often in the hands and feet), but can affect many body parts and bodily functions, according to the Mayo Clinic.
“I love being able to navigate the hills and get assistance from a little motor. This condition knocked me out and because of e-bike technology I was given another chance,” Maassen says, who was also overcome with depression and anxiety since his diagnosis. “I feel much better mentally, and e-biking gave me hope to work on this condition and have control over my destiny.”
To help spread awareness of both peripheral neuropathy and the benefits of e-bikes, Maassen is now riding across the U.S. on his own e-bike, while raising money for research and education on the condition.
Receiving the Peripheral Neuropathy Diagnosis
In October 2016, Maassen was working in South Africa for USAID while also researching a hiking book he co-authored, South Africa: Hiking Trails in and Around Pretoria and Johannesburg. While there, he accidentally came across a nest of nearly 100 tiny ticks which ended up biting him. His entire body burned for 10 days after the tick encounter, followed by nearly a year of malaise and escalating symptoms, including a hoarse voice and prickling sensation in his hands.
“I most likely picked up an [unidentified] pathogen—probably a virus—that set off my system,” says Maassen.
By 2018, Maassen needed surgery to remove an infected cyst inside his nose, insomnia started, and the feeling of burning throughout his arms returned, as well as small muscle twitches in his legs. By August 2018, he became incredibly ill and bedridden with flu-like symptoms and “could not function anymore,” he says. Maassen visited doctors in South Africa as well as physicians in the Netherlands, where he was born. But his doctors couldn’t pinpoint a diagnosis.
“Doctors thought I was psychosomatic,” he says. “But it was so physically debilitating.”
In spring 2019, Maassen, who had felt painful symptoms and sickness since the initial onset, and his wife, Janet Katz flew stateside for him to see Ahmet Hoke, M.D., Ph.D., the director of the neuromuscular division at Johns Hopkins Medicine.
“There are well over 100 different types and different causes of peripheral neuropathy. It’s a silent epidemic, because there isn’t one unifying type or symptom,” Hoke tells Bicycling.
The risk of peripheral neuropathy also increases with age, says Hoke. While diabetes is the most common cause, there are many other potential catalysts including autoimmune diseases, infections, vitamin deficiencies, and more.
“The type Gregory has was a post-infectious peripheral neuropathy in association with a viral infection or vaccines, a relatively uncommon type that’s often misdiagnosed,” Hoke explains. “With a careful examination and appropriate testing, we were able to diagnosis through a skin sample.”
How Cycling Helps Those With Peripheral Neuropathy
No medication exists to treat peripheral neuropathy, but rigorous exercise can slow degeneration and increases nerve regeneration, Hoke says.
“I’ve been here at Hopkins for more than 20 years. I’ve seen patients who were progressing and once they started an exercise regiment, over a five-year period—when we should see worsening—we see no further progression of their neuropathy,” he explains.
A routine that Hoke recommends to patients with the condition includes 30 minutes of daily, low-impact aerobic exercise, like bicycling (outside or on a stationary bike) or swimming, five days per week. He tells patients to aim for a heart rate that’s 40% to 50% above their baseline heart rate. They also need to swap one or more of those 30-minute sessions for supervised weight training, such as with a personal trainer or spotter. (Hoke also co-authored a study, published in the peer-reviewed journal PLOS One in 2014 that showed exercise improves nerve regeneration and functional recovery for central and peripheral nervous system disease.)
“When you exercise your big bulky muscle groups like quads and hamstrings release certain growth-associated proteins into the blood, nerve growth factors, and neurotrophic factors, which help maintain the integrity of the nerves,” Hoke explains.
Fortunate for Maassen, “the type of peripheral neuropathy he experienced was a one-time attack on his nerves by the immune zone that resets itself and allows the nerves to regenerate on their own, which takes two to three years,” Hoke says.
Taking His E-Bike Cross Country in Hopes of Helping Those With Peripheral Neuropathy
Solo and unsupported, Maassen is covering approximately 4,500 miles on an e-bike from Washington D.C. to San Francisco. (The plan was to originally go about 3,400 miles, but he’s added different stops along the way.)
He named his route the Eisenhower-Lincoln Highway Transcontinental Cycling Route, which follows a historic path pioneered by Dwight Eisenhower and a 81-vehicle convoy in 1919, which inspired the creation of the Interstate Highway System in 1956, meant to allow for safe transcontinental travel.
Maassen’s route, which he will make available and free for bikers to access on ebikelovers.com, is designed to be e-bike friendly with plenty of accommodation options to recharge the bike batteries. Maassen will also plans to produce a documentary film about the new cycling route, publish a guidebook, and the master GPS file will be made available for downloading, he says.
Maassen started the four-month expedition in April and is on track to finish this month. He covers nearly 55 miles per day, and uses the Warm Showers community for bicycle tourists to find overnight stays and hosts.
“I have a very comfortable, good bike with an anti-vibration stem on the handlebar to prevent a strain injury on my wrists, a seat post that has shocks built in, and upgraded front shocks to prevent my body from absorbing the vibrations,” Maassen says of his ride. He’s riding a Riese & Muller Supercharger with a burly trailer and panniers in tow that altogether total 416 pounds.
“My convoy is exceptionally heavy, as I have lots of heavy film equipment,” he says. “One normally does not have so much film equipment while cycling across America.”
Maassen, a native of the Netherlands, also completed his U.S. citizenship during the ride. “It’s awesome to really be part of American society and give back to this organization for peripheral neuropathy,” he says. “I have met so many people on this e-bike tour that have [peripheral neuropathy] or know someone who has it. We need more funds available for this debilitating condition.”
Maassen has raised more than $130,000 so far, and the money will go to the Foundation for Peripheral Neuropathy. Donations will be accepted through the end of September 2022. To learn more and support his cause, visit ebiketour.org.
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