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The WPC: One Scientist's Perspective
By Pietro Mazzoni, M.D., Ph.D.
When I saw the announcement for the World Parkinson Congress (WPC) just over a year ago, my first thought was, "Why is another conference on Parkinson's disease being organized?" After all, volumes of clinical research findings on Parkinson's disease are regularly presented at the annual meetings of the American Academy of Neurology and of the Movement Disorder Society, and basic science research is discussed at conferences such as the Society for Neuroscience's annual meeting. So how was this new meeting going to be different?
A few weeks later one of my patients and his wife asked me whether I was planning to attend the WPC. Yes, I answered, while thinking to myself how unusual it was that a patient would know about a scientific meeting. Then they told me that they, too, were attending! That was how I found out that the meeting was going to have sessions for patients. But even then, my mental picture of the Congress was of sets of parallel sessions - one for researchers and one for patients. This in itself would have made the WPC a special meeting, with research sessions like those at other meetings, plus an additional component designed for patients.
When I arrived in February at the Convention Center in Washington, DC, I found that I had guessed only the half of it. The WPC, I learned, was not a conference with research sessions "plus something else." The presence of patients made the meeting an entirely different experience from any other conference. I had expected that the scientific sessions would occur in one area and would be attended by doctors and researchers, and that the patients' sessions would be separate and be attended only by patients. Instead, I saw patients and doctors criss-crossing in the hallways, attending one another's sessions. I initially thought, why were patients attending scientific sessions, and why were doctors attending sessions designed for patients? Even more mysterious to me, as I looked through the program, was that I often found it difficult to tell whether a session was meant for patients or doctors.
This, it turned out, was deliberate. For when I began to talk with my fellow attendees, both colleagues and patients, it became apparent to me that my confusion was due to my own expectation that doctors and patients would be interested in different topics. The meeting's planners did not have this barrier in their minds when they designed the program. They simply assumed that many topics, if not most, would be of interest to both doctors and patients - and are worth discussing in a forum where both groups are present together.
After realizing that the WPC was designed to open a discussion of Parkinson's among doctors, researchers and patients, I at last understood why this meeting was truly unique. Several scientific sessions were attended by patients, many of whom asked questions that researchers are not used to hearing. Even though the technical language used by researchers made some of these interactions difficult, it provided the opportunity for both doctors and patients to gain a new perspective on the problem being discussed. I, for one, had not realized how educated patients and their families are these days about Parkinson's disease. This curiosity deserves to be nurtured, and the WPC offered a wonderful model of making this happen - and of cultivating relationships among doctors, researchers, patients and their families.
After all, although medications can reduce some of the symptoms of Parkinson's for several years, there is no question in my mind that the biggest contribution to managing the disease comes from each individual's adaptation to the limitations imposed by the disease. These adaptive steps, which include such skills as learning how to avoid falling, figuring out the best medication schedule and fighting off depression, are best achieved by a person who is educated about Parkinson's, with the support of loving caregivers who are also prepared to recognize new problems and help to deal with them. With these thoughts in mind, I looked through the WPC program, noticing sessions such as "Religious Competence," "Changes in Intimacy and Sexuality" and "Dance for PD Symptoms," and found myself wishing that I could attend all these sessions. They addressed topics which regularly come up in discussions with my patients, but about which I know very little.
On the way to an afternoon session at the meeting, I heard loud noises coming from an empty corner of the convention center. How rude, I thought, of the center's staff to make such a racket while a conference is going on. Then I saw that the noise was from drums being played in a session about music, dance and Parkinson's. I hoped at that point that the meeting would offer an experience like that to all those who attended: doctors, researchers, patients, all realizing that there is more to learn about Parkinson's disease than many of us had thought.
Pietro Mazzoni, M.D., Ph.D., is Assistant Professor of Neurology at Columbia University Medical Center in New York. Dr. Mazzoni maintains an active clinical practice for movement disorders and devotes a large amount of his time to research aimed at understanding motor control.