On a cross-country bicycle trip a couple of Omaha guys are drawing attention with signs: “Tour de Tourette.”
People along the way ask them what it means. Some already know.
“I have Tourette's,” a young man said as he donated $20 for the Tourette Syndrome Association.
The two bicyclists are longtime friends Bill Staley, a former judge and a retired college professor, and Frank Jenson, recently retired as Nebraska deputy probation administrator.
They are making the two-month trip from Bellingham, Wash., to New York City to raise research money and awareness. Since childhood, Bill has had Tourette's, a neurological condition defined by involuntary rapid movements — tics and twitches that come and go.
As one who has endured facial tics myself (though never diagnosed as Tourette's), I empathize with Bill. The cause of Tourette's syndrome and other levels of tics — some cases are milder than others — is unknown, but it's believed to have a genetic tie.
Males are affected four times more often than females. About half of cases are resolved without treatment by age 18, but it is lifelong for many. It can be embarrassing.
“When I was a teenager, it was horrible,” Bill said. “I never talked about it to anybody.”
He graduated in 1963 from Ralston High School, where he had played second base and batted leadoff for the baseball team. A good student and avid reader, Bill graduated from the University of Nebraska-Lincoln, where he also earned a law degree and later a Ph.D. in sociology.
He was diagnosed with Tourette's in his 20s.
Bill served for 17 years as a judge of the Sarpy County Juvenile Court, and then spent 17 years teaching at Midland Lutheran College, now known as Midland University, in Fremont, Neb. He retired a year and a half ago.
“Until I became a teacher,” he said Monday, “I never talked about Tourette in public. But it was so obvious in front of a classroom that I started using it as a teaching tool.”
Bill and Frank are longtime bicyclists in events such as BRAN, the Bicycle Ride Across Nebraska. They had talked for five years about a cross-country ride, and the time finally had come.
“Just to see if we could do it,” Frank said. “To prove to ourselves that we're not over the hill, even though we're retired.”
Relatives of Frank's drove them to Washington state, where the pair began their tour on July 14.
“The Cascades were gorgeous,” Bill said. “After we got through a pass and came out of the mountains, all of a sudden there were no trees. That dramatic change in topography was striking. The plains have a different beauty.”
They ride recumbent bikes with back support, and pull small trailers of supplies with the “Tour de Tourette” signs on the back. They gradually have lightened the load, even mailing unneeded things home. The friends have shared a tent, and at times stayed in motels.
Over the weekend, Bill's wife, Janet, drove from Omaha with his dog, Izzy, and met the bicyclists in Princeton, Minn., north of the Twin Cities. The riders rested on Saturday, but by Monday had made it to St. Croix, Wis.
They had surpassed 2,000 miles, with about 1,200 to go. They plan eventually to ride through Canada to Niagara Falls and then down the Hudson River valley to New York. The tentative plan is to end in the borough of Queens, home of the Tourette Syndrome Association.
They enjoy meeting people, and they have given some interviews. To read their blog or to donate, go to www.active.com/donate/teamtsa1/tourdetourette.
Bill and Frank's speed across the northern tier on their Tour de Tourette surely wouldn't compete with cyclists in the Tour de France. But for a pair of 66-year-old retirees who keep moving in all kinds of weather, the excursion qualifies as a tour de force.
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