Talking about Parkinson’s disease is encouraged. Whining about it isn’t, at least not when Roy Roden, creator of the PD Challenge bicycle crusade, comes to town.
The Miami cyclist pulled over in Sacramento on Thursday during his 2,000-mile ride from Vancouver to Tijuana, during which he’ll peddle messages of hope and healthy living to Parkinson’s sufferers down the coast.
Roden, 57, is one of about one million people in the United States living with Parkinson’s disease, a neurological disorder that decreases the brain’s production of dopamine, the chemical messenger responsible for coordinating movement. Its motor and cognitive symptoms include tremors, muscle rigidity, lack of balance, memory problems and dementia. While Parkinson’s itself is not fatal, complications related to the disorder, such as falls or difficulty breathing, can put patients at risk of death.
In the years following his 2009 Parkinson’s diagnosis, Roden could not button his shirt, brush his teeth or play Monopoly due to the severity of his symptoms, he said. He was taking about 30 prescribed pills a day.
There is currently no medication to halt or slow the progression of Parkinson’s, just symptomatic relief in the form of dopamine replacement. While this keeps the disease at bay for a while, most patients become desensitized to the drugs after a few years, said Dr. Kia Shahlaie, director of minimally invasive neurosurgery at UC Davis Medical Center.
Some patients are eligible for deep brain stimulation, or DBS – a one-day surgery that has produced positive results for Parkinson’s patients in the last decade. Roden underwent DBS surgery in 2012. Less than a year later, he was on a bicycle starting a 5,000-mile journey from Seattle to Miami, during which he spoke to many groups about his remarkable reduction in symptoms.
During a DBS procedure, physicians implant an electrode into the subthalamic nucleus, an area responsible for coordinated movement. In Parkinson’s patients, the area is hyperactive and fires signals in an irregular pattern. The electrode, powered by a pacemaker in the patient’s chest, delivers a constant, monotonous high-frequency signal that can stabilize the subthalamic nucleus and keep motor symptoms at bay.
“If you think of the brain as a computer, it’s kind of like a mini-computer you’re wiring into it,” Shahlaie said. “It drives some chemical reactions to happen naturally, but it doesn’t deliver any chemicals ... it’s a real life changer.”
Shahlaie is now exploring the surgery’s significance for non-motor symptoms. His research with animals has shown that turning the electrode to a lower frequency may improve cognitive function.
Starting this summer, Shahlaie will enroll 20 DBS candidates in a clinical trial in which they’ll be on the low-frequency setting before being switched to the high frequency that they’ll remain on for movement help. If successful, the study will be one of the first to show the benefits of DBS for cognition.
“The benefits we’ve seen in the lab have been quite dramatic, and we’re hopeful that we can emulate that for our patients,” he said. “Ultimately, we’d like to expand what DBS can do and make more people eligible for it.”
Roden spoke briefly about DBS with members of the Parkinson’s Association of Northern California on Thursday. He’ll make many stops as he continues down the coast, raising money for the Michael J. Fox Foundation along the way.
Roden started the journey in mid-March with Mick Beaman, a fellow cyclist living with Parkinson’s, and Beaman’s girlfriend, Zada Shafer. Beaman, 45, said cycling has helped him focus mentally and work on his balance, and that doing something enjoyable, whether physical or not, is key to staying positive about the disease.
“Forced repetition on a bicycle is one of the best things people with Parkinson’s can do,” he said. “We all can’t ride bicycles. We all can’t run, we all can’t walk. But we can all do something up here,” he said, indicating his brain.
Casey Jones, who runs the local support group, said he rides a three-wheeled bike because he can no longer control a standard model, but still enjoys being outside. The group, which meets once per month, was happy to host the visitors, he said.
“It’s really good to see somebody out doing something for Parkinson’s,” said Jones, 83. “Them going out on their bikes and raising money is far more than what we here can do.”