Leading Movement Disorder Experts and Davis Phinney Join More than 50 Contributors to Offer Innovative Resource for all Ages and Stages of the Disease
Boulder, CO, February 11, 2010 — For the more than 1.5 million Americans living with Parkinson’s disease, the importance of medication is well understood, but discussion is far less frequent on key topics that impact the quality of daily living with Parkinson’s, such as exercise, nutrition, cognitive changes and depression. Recognizing the need to provide a roadmap for people of all ages and at all stages of Parkinson’s, the Davis Phinney Foundation today announced the launch of Every Victory Counts (www.everyvictorycounts.org), a new program for living well with Parkinson’s. The cornerstone of this program is a progressive, interactive manual designed to inform and inspire people to live well with Parkinson’s today and take a more active role in managing the disease.
In a new twist on traditional medical resource books, the Every Victory Counts manual is a personal, updateable tracker and portable companion that will be of constant value over the course of time. In addition to covering the medical aspects of living well with Parkinson’s through leading movement disorder experts, the most powerful lessons of the Every Victory Counts manual come from the more than 50 people with Parkinson’s who share their stories, which touch on many key topics, such as: Parkinson’s diagnosis, family, young onset Parkinson’s (YOPD), exercise, medication, intimacy, and the importance of humor.
The manual is also highly interactive with more than 15 worksheets, which are designed for communicating with healthcare professionals, family, friends and co-workers, as well as building personal action plans in areas of high interest for people with Parkinson’s, including exercise, depression, nutrition, intimacy and medical approaches like deep brain stimulation (DBS) therapy. Its transportable, three-ring binder format enables users to include articles of interest, medical reports, information from medical visits, as well as updates from the foundation that will be provided to enhance future health care decisions.
“Years of successful cycling competition, including The Olympics and Tour de France, and my more challenging race against Parkinson’s, have taught me that focus, purpose, and being engaged in a challenging process lead to victories just as important as crossing the finish line first,” said Davis Phinney, cycling legend and founder of the Davis Phinney Foundation. “Every Victory Counts is designed to empower you to live well with Parkinson’s today by providing the latest medical information and tools along with encouragement from people with Parkinson’s to help you take an active role in your journey, enjoy victories large and small, and bridge the communication gaps still all too evident in the Parkinson’s community.”
A recent survey conducted by the Davis Phinney Foundation found that communication to help people living well with Parkinson’s is lacking. Among findings, while 82 percent of people with Parkinson’s surveyed said they believe that exercise could improve their quality of life and overall function, less than half (36 percent) reported discussing exercise with their physician (i.e., neurologist or movement disorder specialist). Further, fewer than half discussed the common consequence of depression (42 percent) with their physician, and only 33 percent discussed nutrition.
“The Every Victory Counts manual is an important resource, as it provides as unprecedented collection of strategies and techniques to engage and empower people with Parkinson’s. These resources are presented in a well-organized, easy-to-understand and use format,” said Monique Giroux, M.D., book co-author, medical director of the Booth Gardner Parkinson’s Care Center in Kirkland, WA, and medical director of the Northwest Parkinson’s Foundation. “Connecting with other people with Parkinson’s who have walked in their shoes through the personal stories and anecdotes shared here is an invaluable way to gain additional perspective and motivation to take an active role in one’s own care.”
- The new manual features information, tips and tools in areas such as:
- Parkinson’s diagnosis and management at all ages and stages, including Young Onset Parkinson’s disease
- Exercise, diet and nutrition
- Emotional health, including depression and intimacy
- Caregiver/care partner guidance
- Hospital stays and emergency room visits
- Parkinson’s resources
- More than 15 worksheets to stimulate action and information-sharing
- Medical appointment planning, contact information, symptom diary, medication log and appointment checklist
The manual also includes a thorough review of self-care and medical treatments, including medications and deep brain stimulation surgery. “It is critical to recognize that people with Parkinson’s require a continuum of care that may incorporate different solutions for different people and at different points in time,” said Sierra Farris, book co-author and coordinator of the Deep Brain Stimulation program at Booth Gardner Parkinson’s Care Center in Kirkland, WA.
As part of the integrated Every Victory Counts program, recipients of the manual also will receive: 1) quarterly manual updates; 2) DVDs highlighting new research presented at the Davis Phinney Foundation’s Victory Summit series of symposia and exercises that can help people with Parkinson’s to live well today; and, 3) an inspirational video by Davis Phinney. The Every Victory Counts program is available for a donation of $27.00 and can be ordered online at www.everyvictorycounts.org or by calling 1-877-279-5277. All manual proceeds will support Davis Phinney Foundation-funded Parkinson’s research and educational programs.
Davis Phinney Foundation
The Davis Phinney Foundation was created in 2004 by cycling legend Davis Phinney. Davis Phinney remains the race leader in victories by an American cyclist, and he is a two-time Tour de France stage winner and U.S. Olympic Bronze medalist. The Davis Phinney Foundation funds research focused on exercise, speech and other quality of life therapies, hosts a series of symposia that present research and programs that demonstrate the benefits of these therapies and encourages those impacted by the disease to celebrate the daily victories in their lives. www.davisphinneyfoundation.org