Award-winning journalist Jon Palfreman, author of Brain Storms: The Race to Unlock the Mysteries of Parkinson's Disease, discusses the science behind this mysterious disease.
When award-winning science journalist Jon Palfreman investigated a group of drug addicts who mysteriously ended up with Parkinson's-like symptoms after a bad batch of heroin—the story that would end up launching his career—he never imagined that more than 25 years later he would be diagnosed with the disease himself. Today there are roughly 1 million Americans living with Parkinson’s and about 60,000 new cases each year. In this interview, Jon discusses his new book, Brain Storms: The Race to Unlock the Mysteries of Parkinson's Disease, detailing the scientific history of a search for a cure, as well as his own experience with Parkinson's.
"Biomedical research sits at the intersection of truth and hope. Patients and biomedical researchers have to have hope that sometime in the future, things will get better." - Jon Palfreman
Jon offers advice for translating the uncertainties that often come with medical advice and suggests how we can try to reconcile those odds with our need for concrete answers. He explains our best chances at beating Parkinson's, including approaches that attempt to modify the disease as well as those that work to treat the symptoms.
He also offers three suggestions on how those living with Parkinson's, as well as their family and friends, can understand such a complex disease and thus offer the best support:
1) Embrace your fellow patients who share your diagnosis for they are your new tribe. Connect with the Parkinson's community because you will find inspiration there. Jon tells the stories of a British surveyor who walked the coastline of Great Britain to raise money for Parkinson's research and of a New York ballet dancer who teaches dance classes for Parkinson's patients.
2) Exercise, exercise, exercise. For people with Parkinson's disease keeping mobile is not only important for staying positive but also likely staves off cognitive impairment.
3) Pay close attention to your own body and don't ignore it. You know yourself best and are with your body every day while your doctor may see you only once every 4-6 months.
Have you ever had to deal with a difficult diagnosis? How did you become empowered as a patient? You can weigh on my Facebook page, or follow me on Twitter, where I’m @QDTeinstein. If you have a question that you’d like to see on a future episode, send me an email at email@example.com.
Jon Palfreman, PhD, is a professor emeritus of journalism at the University of Oregon. He is an Emmy, duPont, and Peabody Award-winning journalist, a Nieman Fellow, and the recipient of the Victor Cohn Prize for Excellence in Medical Science Reporting. In addition to producing more than forty primetime documentaries for the BBC and PBS, Palfreman is a coauthor of The Case of the Frozen Addicts and The Dream Machine. He lives in Lexington, Massachusetts.