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Cross-country trip puts focus on Parkinson's
Parkinson's disease doesn't define Roy Roden — he defines it.
“I just want people to understand it is not a death sentence,” he said recently. “It is all about attitude.”
Roden and his wife, Lynn, are riding their bicycles from Seattle to his hometown of Miami to raise awareness of the debilitating degenerative neurological disease. The couple, who average about 50 miles a day, have never bicycled such a long distance before.
“I have never ridden more than 20 miles in my whole life,” said Roy, a lifelong fitness professional. “We aren't killing ourselves. We are on the saddle four or five hours a day, and we will knock out whatever we can knock out.”
The couple left Seattle on Nov. 7 and arrived in Yuma last week after traveling over 1,400 miles. They still have over 2,500 miles before they reach the end of their epic journey.
They paused at Las Quintas Oasis RV Park in Yuma to rest for a few days and to speak to Parkinson's disease (PD) support groups throughout the area before continuing on their adventure.
According to the National Institute of Neurological Disorders and Stroke, Parkinson's is a motor system disorder that results from the loss of dopamine-producing brain cells.
The four primary symptoms of the disorder are trembling hands, arms, legs, jaw and face; stiffness of the limbs and trunk; slowness of movement; and impaired balance and coordination.
The neurodegenerative brain disorder affects about 1 million Americans. About 50,000 new patients are diagnosed with PD each year, but that figure is expected to double by 2030. PD usually affects people over the age of 50, although there is an occasional case of PD developing in young adults.
Roy, who is in his 50s, was diagnosed with PD about three years ago after seeing several different doctors who initially misdiagnosed him. He almost underwent an unnecessary and painful surgery before a nurse practitioner pulled him aside and recommended he see a movement disorder neurologist because she suspected he might have PD. It turned out she was right.
When he was diagnosed, Roy said, “I felt several emotions — including relief. I was thankful because now I had a name. I finally had a diagnosis for what is wrong with me.”
He said he also felt nervous because he didn't know what would come next. “How do I fight the disease that is attacking me? I am not going to sit down and be defined by my disease, and I am not going to let it defeat me.”
At one point, Roy was taking more than two dozen pills a day, which cost him about $1,000 a month, and his quality of life deteriorated.
“He was on about 30 pills a day, and we looked one day, and every single one of them said it may cause drowsiness or confusion,” Lynn said.
By nighttime “he would have a real problem following a conversation. We couldn't play a card game, and God forbid we were watching something that had a plot.”
He also stopped eating in front of other people because his tremors had become so intense. “I was a recluse,” he said.
For more six months, “he wouldn't even eat in front of me,” Lynn said.
“I called it the Parkinson's diet: I just drop all the food before it gets in my mouth,” Roy joked.
Then Roy learned about a new procedure called Deep Brain Stimulation (DBS) Therapy offered by Medtronic, Inc. DBS involves implanting an electronic pulse generator in the chest that delivers impulses to electrodes in the skull. The electrodes disable overactive nerve cells by sending signals to areas of the brain that control movement.
Roy had the procedure performed in July.
“For me it was a no-brainer. You are awake during the procedure. They need you to be awake because they are giving you commands. They want to see if you are going to stutter, or if there is paralysis. It was wonderful. I was out the next day.”
His quality of life improved dramatically, Lynn said.
“He used to take pills four or five times a day. Now he takes them once or twice, and his cognitive functions have come back because he's not on medications. As a relatively young man in his 50s, that is a big deal for us. I am ecstatic about that.”
On the day of his interview with the Yuma Sun, Roy noted he had taken only one pill that morning.
After the DBS procedure was completed, Roy's symptoms diminished and he was able to begin eating in front of other people in public again. “It brought that part of me back and I am so thankful for that.”
Roy and Lynn are now having the time of their lives. They sold almost everything they owned before the trip and have dedicated themselves to being a positive influence on those afflicted with PD.
“A lot of people will sit down and talk to you and listen to you,” he said. “I will help anyone I can, and that is what this is all about.”
He also encourages others with PD to get involved with clinical research.
“They don't hurt. You are under doctor's supervision all the time and have your finger on the heartbeat of what is going on. There are no failed studies. If your drug doesn't work, well, that's one step closer.”
Once the couple finishes their bicoastal ride in February or March, they plan to move to the West Coast, where they will stay active in Parkinson's advocacy, and are looking forward to simplifying their lives.
“It is quality of life,” Roy said. “You prioritize things differently. What is really important? It's not how many zeroes are in front of that decimal point in your bank account. It is how many friends you have, and how many laughs you have.”
For more information about the ride or to donate to the cause, visit www.pdchallenge.com. The Rodens will also update their progress at www.facebook.com/RodenPDRide.
Chris McDaniel can be reached at firstname.lastname@example.org or 539-6849.