Tag Archives: patient engagement

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

You Asked & We’re Answering: Fatigue in PD

Why is it important to solve fatigue in PD? First, it is a debilitating symptom experienced by many people with PD; yet it is difficult to diagnose and treat. Perhaps more importantly, it is a symptom that people with PD and care partners told PDF was important when voting in the first Community Choice Research Awards survey. This past October, I was pleased to lead a PDF Conference on Fatigue in PD in Chicago, IL. Because this meeting and subsequent research were inspired by the community, my colleagues and I feel it is important to let you know what happened… read more Read More

What about the Symptoms We Can’t See? Diane & Scientists Discuss ‘Invisible Faces of PD’

Do you find that your ‘invisible’ symptoms — the ones that people can’t see like sleep issues or dizziness — are the ones that bother you the most? Many people with PD say this is the case, but just 15 years ago, this wasn’t widely known. The good news is that this past April, a group of scientists got together to speak about these symptoms at a meeting, “Non-motor Symptoms: Unraveling the Invisible Faces of Parkinson’s Disease,” hosted by the New York Academy of Sciences (NYAS) in New York, NY. The better news? Diane Cook, a person with PD, and… read more Read More