PD SELF: Can Self-Efficacy Improve Life for the Newly Diagnosed?

thelen_gilBy Gil Thelen

How about that retired Philadelphia-area organizational development consultant? After his Parkinson’s disease (PD) diagnosis, he surprisingly (to himself) found the capacity to become an accomplished folk painter and soon-to-be-published poet.

Or the retired Richmond, VA, dentist who raises buckets of money for research programs of the Parkinson’s Disease Foundation (PDF)? Or the light-up-the-room, former pediatric office manager from Denver, CO? Not to mention the research coordinator named Chi Chi. And finally, the wisecracking, not-so-retired former newspaper editor and college professor from Tampa, FL (me).

That’s a taste of the 20 people with PD and professionals who trained last month as facilitators for PD SELF, a pilot program of PDF. PD SELF (Parkinson’s Disease Self-Efficacy Learning Forum) “provides those newly diagnosed with PD with an in-depth understanding of PD and self-efficacy tools to manage it with confidence.” We are a cadre of ground troops convinced of this truth: “I didn’t choose PD, but I can choose how I respond to it.”

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PDF Volunteers Reflect on Ali’s Impact on Parkinson’s Cause

Kevin Mazur/ Muhammad Ali at PDF Gala, June 1, 1995/Getty Images).

The Parkinson’s Disease Foundation (PDF) and members of the Parkinson’s community continue to mourn the loss of Muhammad Ali and celebrate his efforts to raise awareness of the disease.

In the days since his passing, many people in the community have shared reflections on his role as the first celebrity to live publicly with Parkinson’s. Below, hear from PDF volunteer leaders — members of our People with Parkinson’s Advisory Council —  as they share their reactions and insights.

(Credit: Kevin Mazur/ Muhammad Ali at PDF Gala, June 1, 1995/Getty Images)

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What My Dad Taught Me About Life with Parkinson’s

by A.C. Woolnough

Robert Woolnough circa 1955

Robert Woolnough circa 1955

As Father’s Day approaches, I reflect on the values my late Dad (at left) instilled in me. As a US Navy Veteran, his diagnosis of Parkinson’s hit him hard. Still, he constantly reminded me to serve others … to be a part of something bigger than self.

When I too was diagnosed with Parkinson’s two years ago, it was my Dad, although long gone by then, who had the biggest influence on me. Because of him, I view Parkinson’s not only as a challenge, but as a way of giving back.

Today, I ask you to join me in giving back and in honoring our Dads. Here are two ways:

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Managing Constipation in PD: Visiting Nurse Notes with Dr. Jean MacFadyen

safranursing-macfadyen-jean-2016Is constipation the most disabling symptom of Parkinson’s disease (PD)? It may be surprising, but many people with PD report to the Parkinson’s Disease Foundation (PDF) that the most bothersome aspects of their disease aren’t tremor or stiffness, but instead are nonmotor symptoms such as constipation and fatigue.

Luckily, researchers are starting to better understand these symptoms and nurses such as Jean S. MacFadyen, Ph.D., R.N., a 2011 Scholar of The Edmond J. Safra Visiting Nurse Faculty Program (EJS-VNF) at PDF are helping people with Parkinson’s to learn about and manage them. We sat down with Dr. MacFadyen to learn about her experience at the nurse faculty program (which just announced several new trainings for 2016) and to learn about constipation and what people with PD should know.

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Sharing His Parkinson’s Story: Q&A with PDF Research Advocate Bob Zimmerman

zimmerman_bobAs a longtime educator, PDF Research Advocate Robert “Bob” Zimmerman, Ed.D., of Sidney, OH, has spent 40 years helping those around him to learn.

Although he is now retired, Dr. Zimmerman hasn’t stopped sharing information with others. The only difference is that now, he is helping others to learn about Parkinson’s. In his new book, Living with Parkinson’s, he shares his 27-year journey with the disease in hopes of helping others. The book chronicles the evolution of his disease, how it impacts his family, and the curve balls that life can toss, when striving to stay positive and live fully with Parkinson’s. The proceeds also support PDF research programs.

What inspired him to share his Parkinson’s journey? Find out in our interview.

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Thanking Nurses During National Nurses Week

Safra Visiting nurse Faculty Program at Parkinson's Disease FoundationWho’s on your Parkinson’s team? For many people with Parkinson’s, nurses are critical members throughout their journey with the disease. In fact, nurses are often the first point of contact for many people with Parkinson’s disease upon receiving a diagnosis.

In recent years, PDF has been working alongside nursing leaders to raise awareness of the ways in which nurses improve the lives of people with Parkinson’s and to provide those nurses with the resources they need.  As we are in the midst of National Nurses Week (Friday, May 6 through Thursday, May 12), we want to thank a few nurses for their efforts and explore the PDF resources available for nurses working on the frontlines with people with Parkinson’s.

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