Boston University supports Davis Phinney Foundation in launching new resource to encourage living well with Parkinson’s Disease

in News Releases, Uncategorized
July 23rd, 2012

Contact: Stephanie Rotondo, (617) 353-7476, rotondos@bu.edu

(Boston) – Imagine you are one of the 60,000 new U.S. cases of Parkinson’s disease diagnosed each year. Where can you turn for accurate information? How can you learn what to expect and how to make things easier? 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: Sargent College has collaborated with The Davis Phinney Foundation and other renowned research institutions to launch the Foundation’s Every Victory Counts® manual’s second edition.  This manual uniquely gives people living with Parkinson’s – and their care partners and family members – the tools they need to take a proactive approach to self-care from diagnosis through advanced stages of the disease, including the latest information for the recently diagnosed, expanded content specifically for care partners and guidance for living with young-onset Parkinson’s. Boston University is among leading Parkinson’s research centers with contributors to the manual’s content.

The Every Victory Counts manual, which is endorsed by the American Academy of Physician Assistants, offers rich, interactive content including a chapter by Boston University’s Terry Ellis, PT, Ph.D., who also served as an advisor for the book. The manual includes worksheets, medication logs and questionnaires, all designed to help people monitor their health, create action plans and facilitate communication with healthcare professionals and care partners. The Every Victory Counts manual also addresses key topics, such as: talking to family and coworkers about the disease, exercise, nutrition, emotional health, deep brain stimulation, medical, surgical and behavioral therapies, intimacy, care partner issues and the importance of staying engaged.

“I’m honored to have worked with The Davis Phinney Foundation on developing a manual that offers individuals and their families a positive resource for living with Parkinson’s disease,” said contributor Terry Ellis, PT, Ph.D., assistant 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 established by Boston University and the American Parkinson Disease Association (APDA).  “Our goal is to empower individuals with Parkinson’s to live life to the fullest and to take an active role in their own care. Using this manual, they can learn unique strategies and techniques to help manage all aspects of the disease.”

Some of the most powerful content in the manual is provided by more than 50 people with Parkinson’s who share compelling and inspiring insights on topics such as exercise, diet and intimacy. These heartfelt and often humorous testimonials offer wisdom on daily living with Parkinson’s and help create a sense of community for readers.

“The Davis Phinney Foundation is proud to provide this expanded resource to the Parkinson’s community,” said Polly Dawkins, executive director, the Davis Phinney Foundation. “Since launching the Every Victory Counts program more than two years ago, we have been encouraged and touched by the positive responses and valuable feedback, which shaped the direction and content for the second edition. We’ve added a primer for the recently diagnosed, extensive material for care partners and new worksheets and graphical references.”

Readers can complement the manual with online worksheets, the Living Well Challenge webinars (http://davisphinneyfoundation.org/living-pd/webinar/), expert Q&A videos (http://davisphinneyfoundation.org/living-pd/live/exercise/updates/) and tools like the Top 10 Tips for Exercising with Parkinson’s (http://davisphinneyfoundation.org/living-pd/tools-today/).”

“Having competed successfully in the Olympics, Tour de France and countless other grueling professional cycling events, I know firsthand that attitude, focus and engagement can lead to victory in difficult, demanding circumstances,” said Davis Phinney, founder of the Davis Phinney Foundation and the winningest cyclist in US history. “For people like me who face the challenges of Parkinson’s each day, it’s critical we apply this same approach to our journey with Parkinson’s. With the expanded Every Victory Counts manual, we are empowering people to take control and motivating them to find and savor their moments of victory.”

The Every Victory Counts program manual is available for a donation of $27.00 and can be ordered at http://davisphinneyfoundation.org/living-pd/victory-counts/getyourcopy/ or by calling 1-855-PHINNEY. All manual proceeds will support Davis Phinney Foundation-funded Parkinson’s research and education programs.

Davis Phinney Foundation

The Davis Phinney Foundation was created in 2004 and is dedicated to helping people with Parkinson’s disease to live well today. The Foundation’s major initiatives include: the Every Victory Counts® manual, developed by movement disorder experts to provide practical ways to live well with Parkinson’s; The Victory Summit® symposia series, which brings leading experts into communities to share advances in science, care and to inspire those affected by the disease to celebrate their daily moments of victory; the Living Well Challenge™ educational webinar series; and, the funding of research focused on exercise, speech and other quality of life therapies. Visit the website: www.davisphinneyfoundation.org.

Boston University College of Health and Rehabilitation Sciences: Sargent College is an institution of higher education, which fosters critical and innovative thinking to best serve the health care needs of society through academics, research, and clinical practice. As reported by U.S. News and World Report, its graduate programs in Speech-Language Pathology and Physical Therapy are ranked in the top 8% of all programs while Occupational Therapy is #2 in the nation.  For more information and to learn about degree programs in occupational therapy, physical therapy, speech, language and hearing sciences, health science, athletic training, human physiology and nutrition, visit http://www.bu.edu/sargent.

Founded in 1839, Boston University is an internationally recognized private research university with more than 30,000 students participating in undergraduate, graduate, and professional programs. BU consists of 16 colleges and schools along with a number of multi-disciplinary centers and institutes which are central to the school’s research and teaching mission.

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