The ride of his life
Two rare genetic diseases take a doctor and bicycle enthusiast on a new journey
It was late July 2005, and Stuart Gherini struggled with his failing body.
The cycling enthusiast had just spent weeks riding more than 2,000 miles, following the mountainous Tour de France route from start to finish.
Now, standing on a street corner in Amsterdam with his wife and cousins, he told his family he’d decided to quit the sport.
Gherini was diagnosed with Parkinson’s disease in 2003, and in the time since, the disease had attacked his nervous system, making it hard to balance and giving him a jerky pedaling rhythm on the bike.
Just then, a velomobile zoomed down the street. The rare European tricycle, Gherini observed, didn’t require much balancing, and the superior aerodynamics seemed ideal for a flat country like Amsterdam, or even a city like Sacramento.
Perhaps his cycling days weren’t over, Gherini told himself.
He’d already said goodbye to so many things. Gherini’s career as an ear doctor would eventually end in 2006. A decade earlier, he’d already closed his private practice as an ear surgeon. He’d spent much of his life studying and training, and a decade building a solid reputation as a surgeon before Fuchs’ corneal dystrophy forced him out of surgery in 1996 when he underwent two corneal transplants to treat the disorder; the surgery affected his ability to see the intricate microsurgeries his hands were performing.
Now, Gherini admits he feels robbed, inheriting a genetic disease that afflicts less than 1 percent of the population.
“I had the No. 1 score in the country on the ear, nose and throat board [exams],” Gherini said. “I had a big thriving practice, and then the eye problem hit. Where I landed was doing industrial exams, yet I discovered the more you know about anything, the more enjoyable it becomes.”
Nervous, but trying to keep a positive outlook, Gherini transitioned into a different job in otology for which he cleaned out ears, did workers’ compensation exams, and read and wrote reports for personal-injury lawyers.
But then the Parkinson’s diagnosis came in 2003, and the doctor retired for good in 2006 after realizing that, eventually, he wouldn’t even be able to clean out an ear.
So began several more transitional years for Gherini, trying to figure out his aging body. His old pastimes of surfing and helicopter skiing were no longer possible either.
“I kept skiing for two years after I was diagnosed with Parkinson’s,” he said. “I did OK. But when the mantra going through [my] head was ‘Don’t get hurt, don’t get hurt,’ it was time to turn in [my] skis.”
So it was back to the bike, a childhood love. Just months after seeing that fateful velomobile cyclist in Amsterdam, he purchased his first one. His custom-built velomobile, called a Waw (pronounced “wow”), was imported from Belgium and now resides in his East Sacramento garage with nearly a dozen other bicycles, tricycles and velomobiles.
Gherini’s favorite bike is a traditional two-wheeled road bike built by Sacramento bike maker and friend Steve Rex. He can’t ride it all the time, however, because of his Parkinson’s flare-ups. He often loses his balance and falls over during one of his daily 15- to 30-mile rides on the American River Parkway. Sometimes, either due to Parkinson’s or the dopamine he’s taking to treat symptoms of the disease—it’ s hard to tell anymore—Gherini takes breaks on the side of the bike trail to throw up.
Most Parkinson’s medications have bad side effects, he says. There’s really only one Parkinson’s treatment he enjoys in high dosage: cycling.
He says he’s particularly interested in new research on Parkinson’s patients co-authored by Jay Alberts, a Cleveland biomedical engineer with a specialty in kinesiology.
In 2009, Alberts conducted a study showing that people with Parkinson’s who regularly pedal on a bicycle at a rate between 80 and 90 revolutions per minute show a 35 percent improvement in motor function.
“Our results suggest that exercise intervention programs for Parkinson’s disease patients … could alter the course of Parkinson’s disease,” Alberts wrote in his study.
Gherini’s daily treatment involves sitting on a tandem cycle with someone else pedaling, or strapped to a stationary tricycle hooked up to an electric motor in his garage. These devices allow his arm and leg muscles to be exercised, spinning around in circles at a fast rate. It’s called passive exercise.
When his core and stabilizing muscles aren’t feeling great, Gherini rides one of his two velomobiles. One is the Waw, which is decorated as a P-51 Mustang plane from World War II, complete with a faux instrument panel, an iPod with machine-gun sound effects, and two on-board speakers.
“It’s a great project for him,” said Rex, of Gherini’s Waw. “You got to have some fun in life if you do that kind of stuff. You can’t take yourself too seriously.”
The Waw is also a head turner. One time, when Gherini was riding, another cycling enthusiast chased him down just to ask if the bike was indeed a Waw. It turned out to be a 38-year-old nurse from Carmichael and serious velomobile tinkerer, Daniel Runyan. The two became quick friends, and Runyan taught Gherini the art of creating lightweight, more affordable velomobiles out of a corrugated plastic material called Coroplast. Now, they are two of just a handful of known velomobile riders in Sacramento.
“This is like a UFO to most people, yet not only is he open to it, he takes it and runs with it,” said Runyan of his friend.
“He’s [invested] serious time in it [and wrote] a tutorial because he felt that more people can be empowered by it.”
But it’s clearly the Waw that fits Gherini’s family-first personality: The 59-year-old says that his main goal is to be good to his wife and three daughters.
“When you ride through the neighborhood, little kids jump up and down they’re so excited,” he said. “Then if you steer toward them and give them the machine-gun sounds, they practically fall all over themselves. Little kids appreciate the humor in it.”
Despite his health troubles, Gherini says he’s happy to have lived the life he’s had, and is open with his own mortality. Doctors aren’t sure how long Gherini will live and, accordingly, he takes spending time with his family seriously.
“If you write on my tombstone,” he said, “I’d like it to [say], ‘He was a good husband and a good father,’ and, ‘Along the way he was a decent ear doctor, and he always tried to do his best.’”