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Parkinson's patient bicycles cross-country to raise money and awareness
Wednesday February 20, 2013
Victor R Martinez
El Paso Times - Roy Roden now jokes about his early bouts with Parkinson's disease.
"I was a recluse," Roden said. "I couldn't shave, I couldn't eat. I wouldn't even eat in front of my own wife.
"I lost a lot of weight. I called it the Parkinson's diet, but it wasn't a change in nutrition -- I just couldn't get anything in my mouth because I would drop it all before it got there."
Roden, a 55-year-old fitness enthusiast, was diagnosed in 2009 with Parkinson's disease, a neuro degenerative brain disorder that affects 1 million Americans.
Roden and his wife, Lynn, are cycling 4,500 miles across the United States -- from Seattle back to their home in North Miami Beach -- to raise awareness of and research money for Parkinson's disease.
Along their route, the couple have been meeting with other people with Parkinson's and their families, and sharing their personal story of how to live a full, active life with this disease.
They recently rode through El Paso.
"It's been a blessing," Roden said. "Parkinson's has offered me the opportunity to do something bigger than myself. How many people have the chance to say, 'I'm going to try to leave this world a better place than I found it'? In that aspect, I am truly blessed. God has given me so many angels in different forms."
Parkinson's disease is a progressive disorder of the nervous system that affects movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand.
It is the second-most common degenerative disease of the brain, after Alzheimer's.
Although Parkinson's disease can't be cured, medication and other treatments may improve symptoms.
Roden decided to go through Medtronic Deep Brain Stimulation (DBS) therapy, which uses a surgically implanted medical device to deliver mild electrical pulses to targeted areas of the brain involved in motor control and muscle function.
"A couple of weeks after my DBS was turned on, I went from dropping food all over myself to being able to use chopsticks," he said. "There is nothing I can't do now that I couldn't do before I had Parkinson's. I had never driven more than 20 miles on a bike in my whole life. And now, the other day, we did 110 miles. There is nothing I can't do right now."
Lynn Roden said the couple's quality of life has improved significantly, and the tremors Roy experienced before surgery have decreased.
"Because of the medication he was taking, by 6 p.m. he couldn't keep or hold a conversation," she said.
"I asked myself, 'What am I looking at here?' The tremors and all that, I can handle, but am I dealing now with mental cognitive issues -- and I'm only 40 years old. My kids are out of the house, and I now I have to worry that I have an adult child that I'm going to have to take care of?"
But after the surgery, Roy was himself again.
"It was freaky," Lynn said. "We were married one year when he got his PD diagnosis. That's hard. It's a degenerative disease and doesn't get better. É It is such a relief to know that it was the medication (causing his cognitive issues), so now we have years of quality life still ahead of us. I'm married to a normal man now. I have my husband again. Thank God."
Because of the surgery, Roy went from 40 pills a day to four.
"Parkinson's is a problem in the brain where there's a chemical that is not being released as much as it should be," said Dr. Kevin J. Sandberg, who specializes in physical medicine and rehabilitation. "Normally we give that chemical as a medicine and it controls their symptoms. Problem is, that medicine can lead to other problems. We can use the medicine for a little while, then we have to use other medicines to control those side effects."
Sandberg, the chief medical director at Highlands Regional Rehabilitation Hospital in El Paso, said fewer than 20 Parkinson's patients in El Paso use DBS therapy.
"It doesn't help all the symptoms of Parkinson's, but it helps a lot of symptoms that are disabling in Parkinson's," he said.
Las Cruces resident Jon Roberts, 60, underwent the DBS surgery in June 2012 in Albuquerque.
"See all this medication?" he said, holding out several pills of a variety of shapes and colors. "It was about triple the amount."
He took a step back and intentionally shook his head and hands around. "A year ago, I was like this with my hands," he said. "I couldn't stand still. I was doing the Parki dance."
After the surgery, he said, most of the involuntary movements have subsided.
"It's still not easy, but it's a lot easier than it used to be," Roberts said. "What DBS does is improve your motor skills, but it doesn't get all the symptoms."
One thing he continues to battle is cognitive impairment, which can include problems with memory, language, thinking and judgment.
"Just this morning, when we were in Mesilla, I wanted to order coffee and it came out hot chocolate," he said. "I was just stuttering around. That was my off time. We have on time and off time, and what DBS has done for me, it has lengthened that on time, and my off time is not as bad as it was before the surgery."
What also helps Parkinson's patients is exercise, which is one reason Roy and Lynn Roden decided to cycle across the country.
"More than 50 percent of Parkinson's patients go into clinical depression," Roy Roden said. "Exercise is the Number 1 thing, other than taking anti-depressants, which I didn't do. Exercise increases your endorphins, and endorphins are your body's natural anti-depressant."
Celebrities such as actor Michael J. Fox, boxer Muhammad Ali and boxing trainer Freddie Roach, who all have Parkinson's, have given the disease recognizable faces.
"People think it's an old person shaky disease, and it's not an old person shaky disease," Roy Roden said. "Yes, probably 90 percent of people with Parkinson's are 60 years and up, but there are a lot of people who go undiagnosed who are under 60."
He does not mind being in public anymore.
"Before, I was really self-conscious and depressed," he said. "It's not even a matter of avoidance or being embarrassed; it's a matter of being depressed, not wanting to leave your house. Now, I don't mind coming out and talking to people. It's OK now."
Victor R. Martinez may be reached at firstname.lastname@example.org; 546-6128. Follow him @vrmart on Twitter.
Parkinson's disease is often accompanied by these additional problems, which are variably treatable:
Thinking difficulties. You may experience cognitive problems (dementia) and thinking difficulties, which usually occur in the later stages of Parkinson's disease. Such cognitive problems aren't very responsive to medication.
Depression and emotional changes. Many people with Parkinson's disease may experience depression. Receiving treatment for depression can make it easier to handle the other challenges of Parkinson's disease. You also may experience other emotional changes, such as fear, anxiety or loss of motivation.
Sleep problems and sleep disorders. People with Parkinson's disease often may have sleep problems, including waking up frequently throughout the night, waking up early or suddenly falling asleep during the day, or rapid eye movement sleep behavior disorder -- acting out your dreams. Medicines may help your sleep problems.
Bladder problems. Parkinson's disease may cause you to experience bladder problems, including being unable to control urine or having difficulty urinating.
Constipation. Many people with Parkinson's disease develop constipation primarily due to a slower digestive tract.
Sexual dysfunction. Some people with Parkinson's disease may notice a decrease in sexual desire or performance.
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