Ever since Roy Roden was diagnosed with Parkinson’s disease three years ago, he’s been on a race to get the most out of life while his body still can.
He has skydived, traveled, zip-lined.
Now, the South Florida native is putting his relay into higher gear, planting his foot firmly on a bike pedal.
Roden and his wife Lynn, of North Miami Beach, will take off Thursday with their two dogs on a cross-country bike ride from Seattle to Miami, to raise awareness and money for Parkinson’s.
“If you found out you have a degenerative disease, what are you going to do with the next 10 years of your life?” Roden said. “I want to do something.”
Roden, 54, plans to spread the word about clinical trials and share his experience with his most recent treatment, deep brain stimulation.
His doctors are behind him.
“I give it the thumbs up,” said Dr. Carlos Singer, professor of neurology at the University of Miami School of Medicine and division chief of Parkinson’s and movement disorders. “It can be inspiring to people. It’s neat. It shows how active a person with Parkinson’s can be.”
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.
And with the aging baby boomer population, diagnoses are expected to double by 2030.
In the shadow
“For too long, Parkinson’s has really hidden in the shadow of other diseases,” said Joyce Oberdorf, president and chief executive of the National Parkinson Foundation “People have not wanted to go public with it — they thought there might be a social stigma. Even with high profile people being diagnosed, it has not received the attention you would think it would, for a disease that affects one million Americans.”
Parkinson’s causes tremors, slowness of movement and rigidity, and those with the disease can also display a host of other early symptoms, including loss of smell.
Roden experienced his first symptom at 25: insomnia. Over the next 25 years, he displayed a range of other symptoms: difficulty holding a spoon, shaking of his hands, memory problems and an unexplained twitch. In 2009, after visiting many doctors, he was finally diagnosed with Parkinson’s.
Since then, he has participated in clinical research programs and made presentations urging others to join in.
His biggest concern now, he said, is cognitive decline.
“At this point, I’m looking at more quality of life than anything else,” he said.
Roden, who grew up in Pembroke Pines and Miami and graduated from Cooper City High School, has 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, where he still works part-time as a management consultant. Since then, his wife has become a personal trainer.
Lynn, he said, is the impetus for the trip. A free spirit who grew up in Alabama and has lived abroad, she has always wanted to go on a long-distance ride. And at 40, with two teenagers who are now living with her ex-husband in Brazil, she says she feels like she is at a turning point in her life.
“I’m really excited,” she said. “It just gives me an opportunity to redefine myself as a woman, and not just as a mother, and to make a difference.”
Lynn said Roy finally agreed to go on the cross-country trip when he awoke from brain surgery in July. Among his first words: “I’m ready to go with you.”
Exercise is not only important for Parkinson’s patients, but research has shown that because of the chemicals the brain produces during exercise, it can slow the impact of the disease, Oberdorf said.
“These patients don’t have a muscle disease, they have a brain disease,” said Dr. Bruno V. Gallo, assistant professor of neurology and neurosurgery and director of the Deep Brain Stimulation program at the University of Miami School of Medicine. “Their muscles are fine, but they perceive themselves as having a muscle disease because they are slow, they’re stiff, they’re rigid. The more exercise they can do, the better, because it keeps their muscles toned.”
He hopes Roden can motivate others to say: ‘“If this guy can ride from Seattle to Miami, why can’t I just play nine holes of golf?”’
The Rodens have stepped up training to prepare for the 4,500-mile trip, which will take at least three months.
They plan to take five days to drive to Seattle, then ride their bikes an average of about 50 miles a day. Lynn’s brother, David Rambo, will accompany them, driving a Dodge Durango with the 1969 Airstream they will sleep in in tow. The Rodens’ dogs, Samantha and Oliver, will trail behind their bikes in carriers when it’s safe.
They chose the winter months intentionally.
“When you have Parkinson’s, heat is the enemy,” Roden said.
Their bike route will take them along the Pacific Coast Highway to San Diego. Then, they will stay parallel to Route 10 all the way back to Miami.
“It’s going to be quite an experience,” Roden said.
In preparation for the trip, the Rodens have sold much of their belongings, and traded others. In exchange for their Jeep, they got the 27-foot Airstream. They traded a TV for generator. They are giving up their rented home and putting their remaining belongings in storage.
“We are transitioning from quantity to quality,” Lynn said.
They said they have been buoyed by community support. Olympia Gym has held a fundraiser, and several businesses have donated items for the trip. City Bikes in Aventura has given them equipment, including a video camera they can hook onto their helmets. Best Buy has donated an iPad to blog. KOA has offered free lodging.
On the road, they plan to meet with local Parkinson’s chapters, while posting their experiences and photos on their website, www.pdchallenge.com. Roden is hoping to raise $50,000, including from donations made on the site, to give to four Parkinson’s charities.
“I am not an athlete doing something with charity in the background,” he said. “I’m somebody with Parkinson’s trying to do something for Parkinson’s.”
When the Rodens return from their trip, they don’t know yet where they will live. And they aren’t worried about it.
“The journey is going to be fantastic,” Roden said. “I’ve never done anything remotely like this before.”