East Oregonian
Carol Clupny and the Energizer Bunny have much in common.
Like the bunny, Clupny keeps up a steady pace. The bunny, however, doesn’t have Parkinson’s disease, a progressive neurological disorder that affects movement, speech and cognition.
The Hermiston woman resolved to keep moving after her diagnosis eight years ago, shortly after her 50th birthday. The final wake-up call came during a kayaking weekend in the San Juan Islands when she started feeling weak and shaky and had trouble paddling.
After the diagnosis, she realized that exercise helped beat back the symptoms. She shot free throws at lunchtime. Three times, she walked sections of the Camino de Santiago, a web of trails that converge on the Spanish town of Santiago de Compostela from starting points in France, Portugal and Spain. Using carbon trekking poles for balance, she walked over the steep Pyrenees Mountains. Twice, she and husband Charlie pedaled across the rolling hills of Iowa for The Register’s Annual Great Bicycle Ride Across Iowa, billed as the oldest, largest and longest recreational bicycle touring event in the world. She kayaks with a group of female friends and rides her family’s two Tennessee walking horses. A punching bag hangs in her garage.
“I’ve just got to keep moving,” Clupny said.
After the diagnosis, she found an advocate in Charlie.
“Rather than treating Parkinson’s as a death sentence and sitting down and waiting for it to happen, we realized there was a lot of life to live,” he said. “We started making plans.”
She eventually resigned her job as head of the speech and hearing program of the InterMountain Education Services District, where she had worked for three decades, to focus on living with Parkinson’s.
The cycling started in earnest after she read a research study reporting that people with Parkinson’s benefited from hopping on a bike. The study showed that riding at a certain rate for 40 minutes three times a week saw a 35 percent improvement in their symptoms. Tremors eased and the sense of smell often returned in those who had lost it.
She and Charlie borrowed a tandem bike they dubbed the Yellow Mosquito Eater and rode across Iowa. Later, they bought their own bike. They often pedal the Umatilla County backroads with Carol occasionally yelling “faster, faster,” to her husband when traveling downhill.
Her quest to stay active got a boost this spring when she underwent a procedure called deep brain stimulation at the Oregon Health & Science University. Clupny’s surgeon drilled two nickel-sized holes in her skull and implanted tiny electrodes. The electrodes connect to a battery-powered neurostimulator implanted under her left collarbone. The pacemaker-like device delivers continuous low-voltage current to the brain.
Clupny shared her feelings in a blog just before the surgery.
“I will somehow be different when I begin deep brain stimulation therapy at the end of April,” she wrote. “After I am healed up from the two procedures to surgically implant the devices, there will be three programming sessions. Then, we will know how changed I will be.”
A specialist fine-tuned the devices with on-the-spot feedback from Clupny. Since the surgery, tremors have subsided. She has increased control over her voice, moves more freely and needs less medication. She blogged after her first programming session.
“All I can say is ‘Oh, my.’ I think it will be like peeling an onion – more layers and layers will be revealed as this device is tweaked and I discover what I have forgotten I was able to do.”
Recently, the former softball player noticed two men tossing a softball back and forth in a park. She asked if she could play catch, too, to test out her increased mobility. When she threw, the ball hit the glove with a satisfying smack.
“It was just like it was yesterday,” she said.
Though the surgery dialed down the disease, it didn’t wipe it away, but the difference was still remarkable. Charlie, a retired educator, described the before and after.
“Before the surgery, she was unable to hold numbers in her head and do addition. Her cognition was starting to wane,” he said.
Medications wore off faster.
“We’d be having a conversation and her whole body started to weave,” Charlie said. “Her toes started to cross.”
After the surgery, he said she was more alert and quick-witted. The tremors abated and her toes no longer crossed. Her messy handwriting again became legible.
Dr. Matthew Brodsky, medical director for OHSU’s deep brain stimulation program, said DBS works best for Parkinson’s patients who are experiencing excessive involuntary movements and for whom medication is losing its effectiveness.
“There are perturbations of signaling that occur in the brains of people with Parkinson’s,” Brodsky said. “Deep brain stimulation helps to reset or normalize this signaling within the brain.”
The procedure isn’t a cure, he said. The disease will continue to progress, albeit with the suppression of some of the symptoms.
In her quest to live well with a degenerative disease, Clupny draws encouragement from her many friends, some who have Parkinson’s and some who don’t. One of them, a Seattle resident named Nan Little, is something of a mentor for Clupny. Little, who schooled Clupny in cycling, has climbed Kilimanjaro and is the author of “If I Can Climb Mt. Kilimanjaro, why can’t I brush my teeth?”
Clupny also gets comfort and camaraderie from a Facebook group of Parkinson’s patients and members of a Parkinson’s support group she and Charlie started several years ago. The group meets at noon, the first Monday of every month at Desert Lanes bowling alley. She also spends time with her guitar, sometimes jamming with a bluegrass group that meets weekly at the Great Pacific in Pendleton.
A life with Parkinson’s is challenging every day, even with the neurostimulator in her chest. Clupny said she tries to dwell on the positive, because “being irritated and upset is a waste of personal energy.” Instead she hops on her bike or “grabs a couple spoonfuls of Cherry Garcia.”
“You have to make a choice,” Clupny said. “And you have to choose it every day.”
Clupny is in the process of turning her blog into a book.
http://www.eastoregonian.com/eo/local-news/20161202/woman-combats-debilitating-disease-by-staying-active
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