Four years ago writer and producer Jon Palfreman was diagnosed with Parkinson’s disease. He has chronicled his experience and that of many other “Parkies,” as patients sometimes call themselves, in two books, the latest of which is Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease, published this year by Scientific American / Farrar, Straus and Giroux, which traces some of the recent progress of medical researchers in treating this disease. He shared with Scientific American MIND senior editor Kristin Ozelli some of the insights he gleaned while working on this book.
[An edited transcript of the interview follows.]
You wrote an earlier book about Parkinson’s and produced a prize-winning documentary, The Case of the Frozen Addicts, and have experienced the disease personally. While you were researching Brain Storms, was there anything new you learned about the disease that really surprised you?
What is truly surprising is just how long biomedical research takes to deliver life-changing therapies. The promising therapies around when I wrote my first book 20 years ago, like neural grafting and growth factors—therapies designed to replace, revive or protect dopamine neurons—well they haven’t panned out. On the other hand, since my first involvement with Parkinson’s, there have been some extraordinary advances in basic science.
In a sense, the disease has been rebranded from a movement disorder (resulting from damage to a very small part of the brain) to a systemic condition involving not only tremor and rigidity but also a whole host of symptoms—from depression to sleep disorders, from constipation to dementia. Indeed, there’s an entirely new theory of the disease that sees it as being driven by a protein alpha-synuclein that goes rogue and, prionlike, jumps from neuron to neuron creating havoc. So while there’s a lot more knowledge about the disease, the chemical L-dopa, discovered some 50 years ago, remains the gold standard of treatment. That’s pretty surprising.
In the book you talk about a variety of different ways people cope with the symptoms of Parkinson’s, in addition to more conventional treatments such as medication and deep-brain stimulation. Why is it so important for Parkinson’s patients to get exercise and keep moving?
Exercise makes everything better for everyone but it is especially important for a Parkinson’s patient who may start to move less and less. The speed at which a person walks is highly predictive of mortality and morbidity. Regular walking, stretching and strengthening exercise not only keep Parkinson’s patients active (and less likely to fall) but also may be neuroprotective and improve cognition. I am a great fan of exercise. And the new wearable sensors—which can monitor minute-by-minute changes in motor symptoms—may soon contain feedback mechanisms to help patients improve their gait as they move.
You interview Parkinson’s patient Pamela Quinn, a trained dancer, who uses visual cues and music, among other things, to keep her body moving to her will. How do these tactics jibe with what scientists know about the basal ganglia and the mechanics of the disease?
Pam Quinn’s tricks fit well with what we know about the basal ganglia. In Parkinson’s the signals passing through the basal ganglia are garbled and disrupt communication between the brain and the muscles. Having Parkinson’s feels a bit like going on vacation in another country and having to drive on the “wrong” side of the road. When an American, who has spent thousands of hours driving on the right side of the street tries to drive in England, his learned habits are a liability. To compensate, he must invoke the deliberate and goal-directed part of his brain—the cortex—to override the basal ganglia. That’s just what dancer Pam Quinn teaches her fellow Parkies to do: to use visual and auditory cues and conscious imagery to engage other parts of the brain and bypass the basal ganglia.
In your opinion, what research avenues currently offer the most hope for the future of treating Parkinson’s disease?
Alpha-synuclein has caused a lot of excitement. There are multiple efforts to develop agents—from novel drug candidates to viral phages—that can break up clumps of alpha-synuclein throughout the brain in the hope that Parkinson’s can be arrested in an advanced case and perhaps even prevented if caught early enough. Several products are about to enter [U.S. Food and Drug Administration] phase I trials. This is very exciting stuff.
FIND AN EXCERPT FROM “BRAIN STORMS: THE RACE TO UNLOCK THE MYSTERIES OF PARKINSON’S” IN THE SEPTEMBER/OCTOBER ISSUE OF SCIENTIFIC AMERICAN MIND