Miami couple finishes cross-country trek to raise awareness for Parkinson’s

 

Information

•  Rodens’ bike ride: www.pdchallenge.com.

•  Parkinson’s disease: www.parkinson.org or call 800-4pd-info.


icordle@MiamiHerald.com

Roy and Lynn Roden bicycled up the snowy mountains in Washington and through a sandstorm in the New Mexican desert. They picked apples, marveled at seals and hummingbirds — and grew closer with each mile.

Most of all, they spread the word about Parkinson’s disease, as they rode cross-country from Seattle back to Miami with their two dogs riding behind them in carriers. Samantha is their Labradoodle; Oliver, their English springer spaniel.

“If I can travel 5,000 miles on a bicycle, maybe it can motivate someone to get out of the house, and just take a bike ride or walk around the block and get some exercise,” said Roy Roden, 55, of North Miami Beach, who has Parkinson’s.

Roden and his wife returned to Miami on Friday, completing their four-month “PD Challenge.” Looking trim, fit and tanned, they cycled to the University of Miami Miller School of Medicine amid much fanfare, welcomed by Roy’s doctors, family, friends and other members of the Parkinson’s disease community.

“It’s an amazing trip, and it’s obviously going to increase awareness of Parkinson’s disease and that there are treatment options that improve quality of life,” said Dr. Jonathan Jagid, a neurosurgeon and associate professor at UM Miller School of Medicine.

During their adventure, the Rodens met with Parkinson’s patients and researchers, sharing their experiences of managing the disease. Roy encouraged patients to join clinical trials and spoke about the benefits of Deep Brain Stimulation, a treatment he underwent in July that suppresses Parkinson’s symptoms.

“Talking to people about their disease and to other care partners about how it affects them, that was one of the best things for me,” said Lynn, Roy’s wife.

A progressive, neurodegenerative brain disorder, Parkinson’s is the second most common degenerative disease of the brain after Alzheimer’s. It affects one million people in the United States, including an estimated 35,000 in South Florida, according to the National Parkinson Foundation, which is based in Miami.

Each year, about 50,000 to 60,000 cases of Parkinson’s are diagnosed, with an average age at diagnosis of 62. With the aging of the baby boomer population, diagnoses are expected to double by 2030.

Among its symptoms, Parkinson’s causes tremors, slowness of movement and rigidity. Those with the disease can also display a host of other early signs, including loss of smell. The disorder can also affect cognition and gastrointestinal functions.

The disease is caused in large part by a deficiency in the brain of the neurochemical dopamine, and progression can take at least a decade. About 15 percent of cases are known to be familial, and the other 85 percent are due to unknown genetic and environmental factors, said Dr. Carlos Singer, professor of neurology at UM and division chief of Parkinson’s and movement disorders.

Roy experienced his first symptom, insomnia, at age 25. Over the next 25 years, he displayed other symptoms: difficulty holding a spoon, hand tremors, memory problems and an unexplained twitch. In 2009, after visiting many doctors, he was finally diagnosed with Parkinson’s.

Last July, Jagid, the UM neurosurgeon, and Dr. Bruno V. Gallo, assistant professor of neurology and neurosurgery and director of the Deep Brain Stimulation program at UM, surgically implanted a device into Roden’s chest with wires leading to his brain. The device, similar to a pacemaker, delivers electrical impulses to precisely targeted areas of the brain involving motor control and muscle function.

Before receiving DBS, Roden was taking as many as 30 pills a day. Now he is down to about three, and attributes his ability to complete the ride largely to the treatment.

Jagid urges patients not to wait or to view DBS as a last resort.

“This is a treatment that will improve quality of life early in the disease,” he said.

Roden, who grew up in Pembroke Pines and Miami and graduated from Cooper City High School, spent 37 years working in the fitness industry. He met his wife of five years when she was a client at Olympia Gym in Aventura. Since then, she has become a personal trainer.

Roy said Lynn was the impetus for the trip. A free spirit who grew up in Alabama and has lived abroad, she had always wanted to go on a long-distance ride. And at 40, with two teenagers now living with her ex-husband in Brazil, she said she felt like she was at a turning point.

“We’ve had so much fun, and even when bad things happened, we got through them,” she said. “It was all part of the experience.”

In fact, they said their marriage grew stronger on the trip, along with their muscles.

“We’re much closer than we ever were,” Roy said.

Their route took them along the Pacific Coast Highway south to San Diego. Then, they stayed parallel to Interstate 10, heading home across California, Arizona, New Mexico, Texas, Louisiana, Mississippi, Alabama and finally, to Florida.

From state to state, Roy held speaking engagements and made new friends. In Texas, the town of Frisco named Feb. 5 Parkinson’s disease and Roy Roden Day.

“People along the way were just angels,” Roy said. “They restored my faith in mankind.”

In New Mexico, a bike club even offered to escort them to the next town.

“It was almost like Forrest Gump — people would ride with us,” Roy said.

In preparation for the trip, the Rodens sold much of their belongings, and traded others. They exchanged their Jeep for a 27-foot, 1969 Airstream. Lynn’s brother drove it part of the time, and a newfound friend drove it for another part.

Now, they’ll pack up their remaining belongings and move west. They plan to spend winters in Tucson, Ariz., — where they will work at a Parkinson’s wellness center — and summers in Westport, Calif. to work at a KOA campground, where they stayed on the trip. Roy will also become an “ambassador” for Medtronic, the maker of his Deep Brain Stimulation device.

First, they are buying a tandem bicycle to keep on riding.

“I really haven’t finished,” Roy said upon his return. “We’re just getting started.”

Added Lynn: “We’re looking forward to many more quality years, and we hope to do our part for Parkinson’s research.”

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