By Dan Novak, Ph.D.
Parkinson’s disease doesn’t discriminate.
It affects the young sports heroes who are bigger than life. It affects the old as they reflect on a life well lived. And me — I got PD at 52.
I don’t know why I got it. But I know that we need answers. Medications help with stiffness, slowness and tremor. But they don’t stop the disease.
With your help, we can do better.
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 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.”
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)
by A.C. Woolnough
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:
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 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.
(Photo credit: Rose Lincoln)
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) and occupational therapy (OT) for Parkinson’s? To set the record straight, we asked Linda Tickle-Degnen, Ph.D., O.T.R/L., F.A.O.T.A., of Tufts University, to weigh in.