This week, the Parkinson’s Disease Foundation is on site at the 4th World Parkinson Congress (WPC) in Portland, OR. Our team of 100 staff, patient advocates and PDF-supported researchers and health professionals joins more than 4,000 delegates from around the globe who are all working toward the same goal: a world without Parkinson’s. Each day, we’ll bring reports to you. Yesterday (Tuesday) was a pre-congress day before the formal program had begun, but it kicked off in full force! Here is what our team saw and heard.
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
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)
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
Did you know that anxiety and depression are common in Parkinson’s disease (PD)? Both of these fall under the umbrella of mood disorders. But despite being common in PD, they often go undiagnosed (or incorrectly diagnosed) and under-treated. By combining forces, a scientist-patient advocate team involving Alit Stark-Inbar, Ph.D., at UC Berkeley and Ronnie Wanetick, a PDF Research Advocate, is finding solutions. The two received a PDF PAIR Leadership Award to study EMOTE, an iPad app that can help to monitor depression and anxiety throughout the day, and even offers games to help ease symptoms. While the app is still… Read More
Are people newly diagnosed with Parkinson’s finding the right support? Many people, when first diagnosed with Parkinson’s, are given little guidance on facing life with a chronic progressive disease. And that diagnosis is life changing — it entails changes to health, relationships, family life, employment and finances. Diane Cook, a member of the PDF People with Parkinson’s Advisory Council, is passionate about changing this. She wants to support the newly diagnosed so they can begin their PD journey on the right foot. Over the past few years, she has developed a program called PD SELF. It provides tools and information… Read More