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The WPC: One Patient's Perspective

By Jean Burns

In late February, I found myself in Washington, DC at the World Parkinson Congress (WPC) along with 3,000 or so doctors, patients and advocates, scientists, caregivers, occupational therapists, physical therapists and more - all coming together for the first time to create a world dialogue about Parkinson's disease. There I was, serving in my roles of patient and advocate side-by-side with world-renowned scientists. After five straight days of scientific and care delivery symposia, social gatherings, meetings and networking, I can testify that the WPC was a truly marvelous experience - both energizing and exhausting!

At the opening ceremonies, Dr. Stanley Fahn, Chair of the WPC, welcomed us to this first-ever event and introduced what was for me the highlight of the Congress: a stirring speech from Michael J. Fox, after which he was of course mobbed by his many admirers. I did not bother to try to shake his hand, it was enough motivation just to see and hear him in person. How lucky people with Parkinson's are to have an advocate of his caliber, and what a perfect start to an incredible event!

After the amazing kick-off, I began to soak in another incredible opportunity: meeting other people with Parkinson's from around the world. I finally got to meet, in person, many of the people from the Parkinson Pipeline Project, a group of advocates and people with Parkinson's that I had been working with for nearly three years by telephone and via the Internet. We exchanged hugs and cemented the friendships that had begun years before in cyberspace. I also met Tom Isaacs, a person with Parkinson's from the United Kingdom, who had been working with our group online for months. He stopped by the Pipeline booth (shared with the European Parkinson's Disease Association, thanks to funding from the Parkinson's Disease Foundation) and introduced his wife, Lindsey, as well as other PD patients and advocates from England, Ireland and Wales. As part of our booth display, we had a video presentation about the people who had participated in clinical trials of GDNF, a neural growth factor. We actually met two members of the Phase II trial and heard their stories. This was truly an example of advocacy without borders. I am from Arizona, and I marvel that I can do volunteer work with people from Florida, New York, Illinois, Washington, DC and even the United Kingdom.

The WPC featured something for everyone. For example, clinical trial participants (like me!) were given an orange baseball cap that said "I'm helping find a cure - ask me how." The hats were available through PDtrials, an initiative of the major Parkinson's patient-voluntary groups, led by PDF, to accelerate the development of new treatments for the disease. I wore that cap with pride. Several people stopped me and asked how I was helping find a cure. I enjoyed talking to them about the importance of joining a clinical trial. Now whenever I give talks about clinical trials and Parkinson's disease, I will be sure to put on my orange cap!

Another unique and exciting element of the Congress was an art exhibit called Creativity and Parkinson's. The exhibit featured works created by people living with Parkinson's, and the range of talent was amazing: photography, painting, jewelry making, exquisite pens hand-turned from wood and so much more. There was even a quilt with pictures of people with Parkinson's disease embroidered on it - and imagine my surprise at seeing my own photo on that quilt!

In a first at a scientific meeting, patients could choose to attend any meeting we wished (even if we were sometimes a bit overwhelmed by the science). One presentation that I attended was given by Dr. Dave Heydrick, a Maryland neurologist who also has Parkinson's disease. His talk focused on the theory that, with lifestyle changes, you can slow the progression of the disease. In his opinion, first and foremost is exercise. (OK, I walk every day, but I do not break a sweat - except in the summer, maybe). His point was that we should try to walk faster, do weight training, take yoga or tai chi and swim. You get the idea: do a combination of exercises. Secondly, he suggested that we consider changing our diet by eating anti-oxidant rich foods or drinking green tea. Before taking on any of these options, he advised, be sure to talk to your doctor to figure out what actions might help you approach your disease management in a well-rounded, complete way.

The next World Parkinson Congress will be in Paris, France in 2009. I have one suggestion for the organizers of the next WPC: have a nap room where people with Parkinson's can lie down and get a little rest. With all the excitement and activity, we can really get tired out! Nonetheless, I have already begun to save for the trip, and I am brushing up on my French: "J'irai au Congrés Mondial de Parkinson!" (I am going to the World Parkinson Congress!)

Jean Burns is a person with Parkinson's disease and an advocate for the Parkinson's Action Network. She resides in Sun Lakes, Arizona with her husband.