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Cycling Legend Davis Phinney’s Foundation Launches New Resource to Encourage Living Well with Parkinson’s Disease

Contact: Wendy Emanuel

Unique Disease Management Guide Combines Comprehensive Information and Tools from Thought-Leading Movement Disorder Experts with Insights from People with Parkinson’s 

BOULDER, CO, July 16, 2012 – 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? The Davis Phinney Foundation today announced the launch of its Every Victory Counts® manual’s second edition, which 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.

“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 manual, which is endorsed by the American Academy of Physician Assistants, offers rich, interactive content co-authored by Monique Giroux, MD, and Sierra Farris, MA, MPAS, PA-C. It 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.

“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.”

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.

“People recently diagnosed, especially those with young-onset Parkinson’s, actively seek information, yet are still unsure how the disease will impact different aspects of their lives over time, what options may be available to them and what questions to ask early on in the disease. All these things can have an effect on quality of life and daily activities,” said Monique Giroux, MD, manual co-author and medical director of the Movement and Neuroperformance Center of Colorado. “Every Victory Counts provides a roadmap with numerous personal stories that can help readers to identify with the experience, see a variety of approaches and feel motivated to take action.”

“In contrast to a typical reference book, Every Victory Counts is designed to be a true interactive companion. We encourage readers to personalize their copy with articles, medical records and notes,” explained Sierra Farris, Director of Deep Brain Stimulation Services and Medical Fitness program at the Movement and Neuroperformance Center of Colorado. “Readers can complement the manual with online worksheets, the Living Well Challenge webinars (http://www.davisphinneyfoundation.org/living-pd/webinar/), expert Q&A videos (http://www.davisphinneyfoundation.org/living-pd/live/exercise/updates/) and tools like the Top 10 Tips for Exercising with Parkinson’s (http://www.davisphinneyfoundation.org/living-pd/tools-today/).”

The Every Victory Counts program manual is available for a donation of $27.00 and can be ordered on the Foundation website (http://www.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. Watch the video below of Dr. Giroux talking about the Every Victory Counts manual and how people with Parkinson’s can use it to help improve quality of life.


Parkinson’s Disease

An estimated 1.5 million Americans are living with Parkinson’s disease today. The disease affects men and women alike, and its frequency is considerably higher in the over-60 age group, although there is an alarming increase in disease diagnosis at a younger age.

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: http://www.davisphinneyfoundation.org.

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