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Facing Parkinson's Disease Together

Clinical trial helps Kent Benander and his wife live fully

Kent and Janie Benander

A fall down a flight of stairs in 2009 forever changed the course of Kent Benander's life. Kent, who was 57 when he took his tumble, thought he had only injured his ankle. Yet the reason he was having trouble negotiating the stairs was actually due to something far more serious than an accident. Months later, he learned he had Parkinson's disease.

"It took a while to figure out because people didn't think about Parkinson's disease in someone my age, but it's more common than people know," said Kent.

Kent received his diagnosis after being referred to neurologist Rajesh Pahwa, MD, at The University of Kansas Health System. The health system is one of only 26 designated National Parkinson Foundation Centers of Excellence in the nation.

Managing the symptoms

After his diagnosis, Kent continued working 10- and 12-hour days as an information specialist at Johnson County Community College. Initially, he was on a low dose of carbidopa/levodopa, an oral medication for Parkinson's disease. "Just a little medicine made it much better for me to move around," he said. "Most of the time you wouldn't know I have Parkinson's disease."

Kent said the medication relieves his symptoms for a few hours. As the medication wears off, his symptoms increase. "On time" is when the medication is working. "Off time" is when symptoms return before the next dose kicks in. These fluctuations often interfere with activities of daily living. "I would lose four or five hours a day from 'off time'," he said.

Diet and meal times also affected his symptoms. For example, protein can hinder absorption of the medication into the bloodstream. "If you take carbidopa/levodopa and then eat a big steak, the medication may not have any effect," Kent says.

Time to retire

By December 2013, Kent's disease had progressed. In addition to oral medication, he was using an injectable form of apomorphine, which helped to reduce his "off time."

With his disease advancing, Kent and his wife, Janie, opted to retire. He had worked 40 years in computer science. Janie worked 25 years as a manager for DST in Kansas City.

"We had planned to retire by that date," says Janie. "But we also had the impact of Parkinson's disease. We didn't want to wait too long, and everything was in place to retire."

To ease Kent's mobility, they bought a new house with most of the main living area on one level. Janie has a big loft for her weaving and quilting projects. Kent has his woodworking shop next to the house in a 900-square-foot garage. He enjoys working on projects for friends and relatives.

A life-changing clinical trial

In January 2016, Kent and Janie learned about a clinical trial that is only offered in this region at The University of Kansas Health System's Parkinson's Disease and Movement Disorder Center. The trial was designed to test the safety and effectiveness of the continuous infusion of apomorphine. Similar to an insulin pump, the device delivers apomorphine continuously over 16 hours.

"What's nice about the infusion pump is you put it on in the morning and it's there all day," Kent says.

Janie says that Kent now enjoys longer stretches of "on time" and spends less time recovering from "off times." "He's more fully functioning with the infusion pump," she says.

"It's the most effective treatment for me so far," Kent says. "I'm able to be more independent for longer periods." That means more time for doing the things he most enjoys, like woodworking.

Looking to the future

Janie is actively involved with Kent's treatment and advocates for him. She especially appreciates the more holistic practice of Parkinson's disease care she and Kent receive at The University of Kansas Health System.

"They treat the symptoms and the patient," she says. "They also evaluate how I feel about being a caregiver and its impact on my lifestyle, my quality of life and my health."

Kent's infusion pump trial ends in December 2016, but he hopes to continue using the device.

Although he has had a positive experience using the pump, Kent and Janie are also exploring another Parkinson's disease treatment with Dr. Pahwa – deep brain stimulation (DBS).

"You have to put on the pump every day," Janie says. "If you shower or go swimming, you have to take it off and put it back on afterward. And it's limited to 16 hours a day. DBS runs 24/7. It's continuous. It seems like it would impact the quality of life in a much more positive way."

Wherever the future leads, Kent and Janie will face it together. "It's not that he has Parkinson's disease," Janie says. "It's we have Parkinson's disease."