Blog Archives: Living with PD

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

By 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… read more Read More

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

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)

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

Is 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… read more Read More

Can Occupational and Physical Therapy Help in Early Parkinson’s?

Earlier this year, a controversial study about physical and occupational therapy and Parkinson’s disease (PD) was published in JAMA Neurology. In contrast to other scientific studies, which have found both types of therapy to be beneficial for people with PD, this one found that the therapies were not. Why is there a discrepancy? Many health leaders expressed concern that the study wasn’t a good measurement, both because it only involved a “low dose” program (just four sessions over the course of two months) and because the  sessions didn’t offer “best practice” therapy. What’s the real story about physical therapy (PT)… read more Read More

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

As 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… read more Read More

Thanking Nurses During National Nurses Week

Who’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… read more Read More