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)
“Can’t” isn’t part of Alan Zimmerman’s vocabulary. That’s why he is on a mission to end Parkinson’s disease, along with an enthusiastic team. This month, he and fellow members of the PDF People with Parkinson’s Advisory Council (PPAC) are launching a special team fundraiser to support PDF research programs. Their goal? Raise $25,000 to support PDF’s Community Choice Research Awards, which support research into unmet needs in PD that are identified by the community. Hear from Alan, known by friends as “Z man,” about why he’s excited to work with his PPAC team to make a difference.
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
As November draws to an end and December peeks around the corner, I feel compelled to lift my head above the daily grind and take stock of life. Because despite Parkinson’s disease, I live a rich and full life. Some blessings come to mind:
You may have noticed that PDF has opened up applications for individuals interested in joining our People with Parkinson’s Advisory Council. Our members, all people living with PD and care partners, are driving PDF’s goal of ending Parkinson’s disease. Each member has made unique contributions to PDF’s work to mobilize leaders in science, health care and the patient community to work together toward a cure. How do they do it? Here are four ways:
Do you think of yourself or your loved one as a “caregiver” in life with Parkinson’s disease? There are some people who identify with this term, but many others who do not, which is why when Rhona Johnson, a former member of PDF’s People with Parkinson’s Advisory Council (PPAC) coined the term “care partnership,” PDF thought it fit perfectly.