What My Dad Taught Me About Life with Parkinson’s

by A.C. Woolnough

Robert Woolnough circa 1955

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:

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

safranursing-macfadyen-jean-2016Is 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.

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

(Medford, MA.- Thursday, November 15, 2007)- Linda Tickle-Degnen is the Department Chair at Tuft University's Boston School of Occupational Therapy in Medford, Massachusetts Photo by Rose Lincoln

(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.

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

zimmerman_bobAs 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.

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Thanking Nurses During National Nurses Week

Safra Visiting nurse Faculty Program at Parkinson's Disease FoundationWho’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.

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PDF Remembers Quilter Ruth Walters

Our Life Together

“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.

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