Brain Storms – Journalist Jon Palfreman’s New Book
Jon Palfreman is a professor of Journalism at the University of Oregon, and an Emmy, duPont, and Peabody Award-winning journalist. You may have seen one of his many documentaries produced for BBC and PBS including The Case of the Frozen Addicts and The Dream Machine.
Being one of the most respected science journalists in the world, Jon’s latest feat is authoring the fantastic new book “Brain Storms – The Race to Unlock the Mysteries of Parkinson’s Disease.”
In the book, Jon outlines his initial grief and urgency to find a cure after being diagnosed with Parkinson’s in 2011. He covers the fascinating history of Parkinson’s discovery and research, what it’s like as a Parkinson’s patient seeking treatment, and the race and hope to find a cure in the near future. Jon’s book is a valuable contribution to the Parkinson’s community, disclosing his many interactions and interviews with researchers, scientists, and patients alike – including APDM’s own James McNames and Fay Horak.
APDM equipped Jon with a suite of Opal wearable sensors for at-home use to monitor his movement outside of a clinical setting. He wore the Opals for three weeks, typically going for an hour-long walk each day. In the book, McNames analyses the Opal data to easily point out emerging asymmetries in Jon’s gait cycle – noting that this is the first sign of trouble. “If not addressed, they might lead to worse gait problems in which I would end up shuffling my feet when I walk rather than landing cleanly on my heels.” (p111)
The power of at-home monitoring is greatly showcased by Jon in his book. As he states on page 103, it is common for patients to feel frustration with the limited amount of time spent with their Neurologists and Physical Therapists, as well as the limits of subjective testing to provide adequate care. As Sara Riggare is quoted in the book, ‘”I see my neurologist every six months for a thirty-minute session and thus spend every year a total of one hour being observed [with the UPDRS].’ ‘That leaves, she says, ‘”8,765 hours per year when my disease is not being monitored.”‘ This use of subjective testing and time limitation neglects to take into account the dramatic variation in results depending on L-dopa on/off states and the fact that patients will perform up to 30% better in clinical settings.
Also demonstrated in the book, Dr. Fay Horak explains the power of gait analysis to reveal intricacies of the disease. She states “You can see Parkinson’s disease in a person’s gait even before you can detect it with a standard clinical exam such as the UPDRS. We can see the upper body doesn’t rotate as much, we can see the arms don’t swing as much, we can measure a drop in the stride length, and the stride velocity, and we can do this even before people are diagnosed with Parkinson’s.” (p107)
Throughout the book, Jon makes the best of his journalistic prowess and provides beneficial insight into the world of Parkinson’s. The compelling story involves his journey through the eyes of a journalist and patient, covering advancements in pharmaceutical and genetic research, therapeutic development, and the challenges surrounding the community. His voice to tell both sides of the story allows him to ask questions as both a reporter and subject, providing a rare insight into the field.