Tag Archives: patient engagement

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

Hospice and Parkinson’s and The Changing Conversation About End of Life

In the past year or so, PDF has seen an increasing number of articles broaching the topic of end-of-life planning — how to talk with a person about his or her care, the role of the family, whether drastic life-saving measures should be taken and whether it is preferable to spend those last days home or at the hospital. Just this week, Barron H. Lerner, M.D., was the latest to weigh in on the topic of end of life with his piece, Overruling My Father, appearing in the New York Times. Dr. Lerner, a physician at NYU Langone Medical Center,… read more Read More

Cindy Says, #MyPDPriority is Dystonia

Which question about Parkinson’s is your priority for scientists to answer? According to Cindy Bittker, M.S.W., a PDF Research Advocate from Hull, MA, the answer is: dystonia. As part of its Second Annual Community Choice Research Awards (open during April), PDF is profiling members of the PD community who have taken our survey to find out the priorities they suggest for scientists. The survey — open to people with PD and care partners until Thursday, April 30 — asks what is most important for researchers to study regarding specific aspects of the disease, including its symptoms, day-to-day management and treatment. Later in… read more Read More

Patient Engagement Works: Lessons from the Learning Institute Year Eight

Two weeks ago, I sat in the back of a conference room in New Jersey, watching events unfold at PDF’s most recent Parkinson’s Advocates in Research Learning Institute, as I have for the past seven years. For the eighth year in a row, we were prepping a group of people with PD and care partners to understand the research process and how they can pair up with researchers to improve it. As I sat there, planning details for the next day and ways to make the training better, I looked up and it hit me – it is working.

Two New Drugs for PD: A Caregiver & Advocate Speaks Out

Last month, it was announced that two new drugs were approved by the US Food and Drug Administration, for treatment of Parkinson’s disease (PD). Both drugs, Rytary™ and Duopa™, are updates to carbidopa/levodopa. They offer, respectively, a newer formulation and delivery method to reduce off-times for those with PD. In this Q&A, PDF speaks with Myra Hirschhorn, one of our trained Research Advocates, to understand the community reaction to the approvals. As part of the Parkinson’s Advocates in Research program, Myra has been trained in the drug development process, and educates her community about research.