Tag Archives: patient engagement

I Voted: Stories from the Community Choice Research Awards

“I used to be a ‘do-er.’ Now I’m a ‘half do-er.’” These are the words Kris Gjerde, a PDF Advocate from St. Paul, MN, used to explain why she voted for apathy in the Third PDF Community Choice Research Awards survey.  She wants solutions so she can keep doing the things she loves. Since the survey launched earlier this month, she and more than 500 people with Parkinson’s and care partners have voted for their research priorities, ranging from sleep issues and anxiety, to gait difficulties and dyskinesia. Why is Kris’ feedback — and yours — so important?

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

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… read more Read More

The Power of Self in Parkinson’s: Q&A with Diane Cook

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 Read More

Improving Palliative Care Throughout the PD Journey: Q&A with Kirk Hall and Gil Thelen

As part of our scientific funding, the Parkinson’s Disease Foundation (PDF) is investing more than $90,000 in Conference Awards in 2015. Through this program, we fund gatherings of experts to address unsolved questions in Parkinson’s, such as, “how can we improve palliative care in Parkinson’s at every stage of the disease?” In October, we hosted a conference to answer this question. Led by Benzi Kluger, M.D. of the University of Colorado, it included a global group of scientists, doctors, health professionals and PDF Research Advocates Kirk Hall of Denver, CO, and Gil Thelen of Tampa, FL. Below, Kirk and Gil report… read more Read More

Four Ways People with PD Are Guiding Our Work to End PD

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:

Where Can Women with Parkinson’s Turn?

“I asked one of the best doctors I have seen — and I have worked with a few — about the effect, if any, of menopause on Parkinson’s disease. Her response was ‘estrogen doesn’t cause Parkinson’s disease,’ which wasn’t my question at all. What I remember about her answer was wondering: where can I turn for a better one?” It is striking just how similar Lisa Cone’s comments are to those of 25 other women who joined the Parkinson’s Disease Foundation (PDF) last month in launching our Women and PD Initiative, the first national coordinated effort to improve the health… read more Read More