Boston University Supports Olympic Medalist David Phinney’s Foundation Effort to Inspire with Every Victory Counts™ Program and Manual on Living Well with Parkinson’s

in BU In the Community, Health & Medicine, News Releases, Sargent College
February 11th, 2010

Contact: Lauren Davalla, 617-358-1688 | davalla@bu.edu
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(Boston) – 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, 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, Boston University’s College of Health and Rehabilitation Sciences is supporting the Davis Phinney Foundation in its launch of Every Victory Counts, 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 and take a more active role in managing the disease. Boston University is among leading Parkinson’s research centers with contributors to the manual’s content.

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 the disease. In addition to covering the medical aspects of living well with Parkinson’s through leading movement disorder experts, the most powerful lessons of Every Victory Counts come from more than 50 people with Parkinson’s who share their stories, which touch on many key topics, such as: diagnosis, family, exercise, medication, deep brain stimulation, intimacy, and the importance of humor.

The manual is also highly interactive with more than 15 worksheets 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. The 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.

“The Every Victory Counts manual is a valuable resource, as it provides unique strategies and techniques to help manage all aspects of the disease,” said manual contributor Terry Ellis, PT, Ph.D., clinical associate professor in the Department of Physical Therapy and Athletic Training at the Boston University College of Health and Rehabilitation Sciences: Sargent College, and director of the National Resource Center for Rehabilitation recently established by Boston University and the American Parkinson Disease Association (APDA). “We are especially pleased to include personal stories and anecdotes from people with Parkinson’s. These stories provide additional perspective and inspiration, and will help empower people to take an active role in their own care.”

The new manual features information, tips and tools in areas such as:

• Parkinson’s diagnosis and management at all ages and stages
• Exercise, diet and nutrition
• Emotional health, including depression and intimacy
• Medical treatments, including medications and deep brain stimulation
• 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 is an ideal companion for all people with Parkinson’s and their care partners. It provides a wealth of information and tools in the form of a true portable field guide that easily can be taken to the doctor and customized with notes, articles, and medical reports over time,” said Marie Saint Hilaire, M.D., associate professor of Neurology, and director of the Parkinson’s Disease and Movement Disorders Center and the APDA Center for Advanced Research at Boston University Medical Center.

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 $22.50 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.

“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 live well with Parkinson’s is lacking. Among findings, while 82 percent of people with Parkinson’s surveyed said they believed that exercise could slow disease progression, 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.

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.

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