Blog Archives: Living with PD

From PPAC: Parkinson’s Isn’t Newsworthy … Until It Personally Touches You

By Peggy Willocks, member, PDF People with Parkinson’s Advisory Council April is Parkinson’s Awareness Month. And it won’t be newsworthy that I came all the way from Tennessee to New York to participate in this past Saturday’s Parkinson’s Unity Walk, where about 10,000 people with Parkinson’s, friends and family “walked” through Central Park as a symbolic gesture to raise funding for research. As a member of the Parkinson’s Disease Foundation’s (PDF) Advisory Council, it isn’t newsworthy that I am also here as a voice of the patient in helping to have better and faster approval of therapies for the debilitating… read more Read More

The Doctor Is "In"… Your Living Room

Yesterday kicked off an exciting and intensive two-day gathering of researchers, health care providers, administrators, patient organizations, people with Parkinson’s and care partners on Long Island, NY. We gathered for the 2013 Merinoff Symposium, “Leveraging Telemedicine to Deliver the Highest Quality of Care to All Parkinson’s Patients,” hosted by the Feinstein Institute for Medical Research at North Shore–LIJ Health System and co-hosted by PDF, other national Parkinson’s organizations and telemedicine organizations.

How Much Does Parkinson’s Disease Cost? New IHS Report Indicates Burden on US Families

This week, a report conducted by IHS-Global was published in the journal Movement Disorders, providing the most comprehensive, economic analysis to date of the direct and indirect costs of Parkinson’s disease to individuals and society in the United States.  (In full disclosure, it was underwritten by the Pharmaceutical Research and Manufacturers of America). While certain premises within the report – most notably, the estimate of the overall prevalence of Parkinson’s in the United States, which is probably on the low side  – may be uncertain, most of the numbers are well thought through and carefully applied to the known data…. read more Read More

A Positive Spin: Creativity and PD

We all appreciate the headlines that help us understand PD symptoms and side effects. But we also find it refreshing to see last week’s selection of stories covering ways to take charge of PD with creativity. Victoria Tane featured in the 2013 Creativity & Parkinson’s Calendar The Science Behind the Spin Last Thursday, we saw a review published on, “The Awakening of Artistic Creativity and Parkinson’s” by Rivka Inzelberg, M.D., in Behavior Neuroscience.  Dr. Inzelberg looked at more than 10 studies investigating, “the ability to produce innovative aesthetic works” in people living with Parkinson’s.  She found that: People with PD who… read more Read More

"Wow," I Have Parkinson’s: Reactions to A Late Quartet and an Early Retirement

Last month, PDF hosted a special screening of the film, A Late Quartet in New York, NY, followed by a conversation with its Director, Yaron Zilberman, PDF Scientific Director Dr. Stanley Fahn and PDF Research Advocate Pam Quinn. If you haven’t yet heard of this film, which is produced by Entertainment One Films, it stars Philip Seymour Hoffman, Catherine Keener, Mark Ivanir and Christopher Walken as a string quartet struggling to stay together in the face of competing egos and … Parkinson’s disease. As you too often tell us, your neighbors and friends may not truly understand the disease.  So… read more Read More