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.
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 support PDF research programs.
What inspired him to share his Parkinson’s journey? Find out in our interview.
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 for their efforts and explore the PDF resources available for nurses working on the frontlines with people with Parkinson’s.
“Our Life Together,” by PDF Artist Ruth Walters
The Parkinson’s Disease Foundation (PDF) mourns the passing of PDF Creativity Artist Ruth Walters, 90, of Santa Fe, NM, who died on January 19. Ms. Walters’ quilt, “Our Life Together,” is featured in the 2016 PDF Creativity and Parkinson’s Calendar for the month of April, Parkinson’s Awareness Month.
“My mom was very proud and happy that her quilt was chosen to appear in the PDF Creativity and Parkinson’s Calendar. She was a passionate and talented quilt artist who loved color, using it to create dazzling beauty. Her creativity carried her through Parkinson’s disease, even when she could no longer sew,” says her daughter Lynn.
Do you or a loved one experience dyskinesias as part of Parkinson’s disease (PD)? The Parkinson’s Disease Foundation (PDF) has exciting news that may affect those of you who experience levodopa-induced dyskinesias (LIDs), the twisting and writhing movements that occur when people take levodopa.
A few months ago, the Food and Drug Administration (FDA) granted orphan drug status to an experimental PD medication called eltoprazine, which is designed to ease LIDs. This status acknowledges that the drug fills an important unmet need (if approved, it would be the first drug available to treat LIDs) and may allow the drug to become available more quickly.
Not only that, the drug was identified for treatment of LIDs in Parkinson’s because of basic science funded by PDF 10 years ago. In this installment of Back to Basics (see installment one here), we give you the story on this drug — how basic science from 2006 might help the PD community in 2016.