Waiting and Hoping

How’s the war on Parkinson’s disease going? That depends on whether you’re a researcher, clinician, or patient. Researchers can claim that they are making spectacular advances in understanding the disease. Clinicians can argue that they manage the symptoms better than at any time in history. If you’re a patient like me, however, then the honest truth is that 200 years after James Parkinson’s “Essay on the Shaking Palsy” progress remains maddeningly slow.

As many persons with Parkinson’s know, PD’s classic motor symptoms kick in after a massive loss of dopamine neurons in a region of the mid brain called the substantia nigra. Over the years, neuroscientists have made heroic efforts to protect, revive, and replace these critical dopamine neurons (the latter with neural grafts), hoping to modify the progression of PD. But, so far at least, these efforts at “disease modification” have failed. Worse, the sobering reality is that these quests each took researchers about 30 years to go from a compelling hypothesis to the clinical trials that determined whether those ideas were right or wrong.

The latest scientific disease-modifying hypothesis focuses on the underlying pathology that kills the dopamine neurons in the first place. The bad actor, many researchers argue, is a common protein called alpha-synuclein, which goes rogue, forming sticky toxic aggregates that jump from cell to cell inside the brain, killing neurons as they go. It’s a very promising idea with a long and fascinating history. The key research that led to this hypothesis took place back in 1997, when scientists Bob Nussbaum and Mihael Polymeropoulos sequenced the genetic mutation for alpha-synuclein carried by members of a large Italian family known as the Contursi kindred (the family was discovered even earlier, in the 1980s). It’s only now over 30 years later that a number of clinical trials are underway to see if targeting and reducing levels of this rogue protein will arrest and perhaps partially reverse the disease progression.

All this is a roundabout way of saying that because biomedical research is so slow, and its outcomes so uncertain, persons with Parkinson’s should not sit around waiting for a cure. While researchers try to unravel this complex disease, patients should try to stay focused on what they can do to maintain a decent quality of life. Perhaps the best bang for the buck comes from participating in regular exercise. Today there are numerous published Parkinson’s exercise studies—which test the effects of everything from walking to tai chi to tango dancing to boxing. They’re generally short term—most of a few weeks’ duration—but they reveal definite benefits from exercise: improvements in physical function, quality of life, cardiovascular fitness, and cognition. Researchers have shown that twenty-four weeks of a twice-weekly tai chi workout, for example, improves Parkinson’s patients’ stride length and reduces the number of falls. Studies of boxing, an activity that involves rapid movements in different planes, report that this exercise activity improves both strength and balance in people with Parkinson’s.

It is sometimes said that a diagnosis of PD is not a death sentence but a life sentence. The overarching issue we patients need to face is how best to live the rest of our lives trying to overcome our significant challenges. And until researchers come up with a major clinical breakthrough, we can take comfort in knowing that regular exercise contributes to a well-lived life. There is, after all, very little to lose and so much to gain.




Jon Palfreman, PhD was a member of the WPC 2016 Program Committee, and also spoke at the WPC 2016. He is the author of the critically acclaimed book, “Brain Storms.: Jon 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.

Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®.