By Cathy Herholdt
Published: Wednesday, March 3, 2010 9:16 AM PST
The Davis Phinney Foundation for Parkinson’s helps people with the disease live better lives by providing essential information and inspiration through its “Every Victory Counts” program and recently published book, which serves as a manual for wellness. The book’s authors are Dr. Monique Giroux, medical director of the Booth Gardner Parkinson’s Care Center at Evergreen Hospital, and Sierra Farris, PA-C, MPAS, coordinator of the center’s Neurostimulation Program. Both have extensive knowledge about the disease, which they share in the book, as well as experience helping patients practice the lifestyle changes that can aid them in feeling better and managing their symptoms. There are also 30 contributors from around the U.S. with varying backgrounds in Parkinson’s disease.
Parkinson’s is a neurodegenerative disease associated with a loss of dopamine-producing nerve cells in the brain, which control movement. The cardinal feature is tremor, which about 70 percent of patients exhibit, says Giroux. Other symptoms include stiffness, muscle cramping, slowness of movement, a mask-like face, shuffling and changes in handwriting. Symptoms change and progress over time, and differ from person to person, making predicting how the disease will progress difficult.
Giroux says research supports the fact that exercise, good nutrition and self-care can help those with Parkinson’s, which is one reason they wrote the Every Victory Counts book. It is designed to be a resource and useful guide for readers, as well as provide encouragement.
“The manual reviews Parkinson’s disease in patient terms. It’s not a text book that will sit on the shelf,” explained Farris. “We hope it will inspire people to find ways to live with the symptoms and empower them.”
The book includes personal stories from people living with Parkinson’s, tips for wellness and worksheets that can help readers track symptoms, medications and changes, and organize information for clinical appointments.
“Not everybody has a Parkinson’s disease specialist. We hope the book will bridge the gap between the patient and primary care physician,” said Farris.
“We plan to use this book as a part of patient care,” said Giroux. “They can use the worksheets to self-manage symptoms between doctor visits, but it can also be used as a part of the actual visit.”
The section on clinical appointments instructs patients to review their treatment plan from the last visit and make note of their progress. “That puts the patient in the active seat rather than in the passive seat,” said Giroux.
Sleep problems, for example, are common with Parkinson’s. One of the worksheets helps patients try different methods to help with sleep at home before resorting to sleeping pills, she said.
Exercise is emphasized throughout the manual not only as a way to feel better, but also to reduce stress, which can exacerbate symptoms. “Research shows from a biological point of view that exercise may be neuroprotective — it might help prevent or slow cell death,” explained Giroux, who also noted exercise may improve cognitive function in elderly patients as well.
Every Victory Counts covers emotional health, such as dealing with anxiety and depression, dietary changes that can promote brain health, spirituality and support.
“Research shows that non-motor problems affect quality of life as much as or more than motor problems,” said Farris. “The reason for the book is that we had patients coming in asking, ‘What can I do for myself?’”
Puget Sound area resident Martin Hovenkotter, 59, is one of the personal stories profiled in the book. Diagnosed at age 40, Hovenkotter is a great example of how self-care and a positive outlook can make a difference with Parkinson’s.
“‘Use it or lose it,’ is something Dr. Giroux tells me regularly, so I stay active and keep my muscle strength up,” said Hovenkotter.
“People have to come up with as much positive to offset the negative,” he said. Keeping a sense of humor is part of that attitude. He enjoys taking walks, but Hovenkotter admits his walls at home are pretty dinged up from losing his balance and falling into them. He also has a tendency to “turn left a lot,” he said. “It’s funny trying to get home from the park when you can’t turn right.”
Hovenkotter has undergone brain surgery twice, most recently in 2008 when he had the deep brain stimulation procedure, which allow programmers like Farris to adjust a stimulator in his chest, which in turn sends electrical impulses to wires in his brain and helps control his symptoms.
The book explains deep brain stimulation and provides resources for surgery and programming.
The Every Victory Counts program helps patients like Martin Hovenkotter feel a sense of empowerment, said Giroux. “With a disease that you lose control, it gives you a sense of control.”
Giroux, Farris and others will speak at a wellness conference on Parkinson’s called “Finding Balance in Life” on March 20 at the Hilton Hotel Bellevue Conference Center. Presentations will include topics such as nutrition, exercise, stress management and emotional health. Admission is free, but registration is required by calling (877) 980-7500.
“Participants in the exercise group maintained their perception of quality of life while participants in the control group scored worse over time. ”