Better Advice I Have Never Received
“There are 4 or 5 days where you can just be free…Everyone knows and understands it…you can just relax.” These were the words of Geoff Constable as he described the World Parkinson Congress in an interview with Larry Gifford. His description of the congress, which took place this past July 2023 in Barcelona Spain, resonates so much with me. Those precious days that the conference takes place, people with Parkinson’s become the majority, the focus, and it promotes a sense of relief that I don’t get to have in my every day life. The conference includes researchers, clinicians, physical, occupation, and speech therapists, family members, and others. Even those who don’t have Parkinson’s at the conference, though, are all familiar with it and understand it. But for those of us with it, it is like an empathy bonanza. You look around and see people experiencing and struggling with things you struggle with every day. Lurching walks, spilled coffee, tremoring arms, flailing bodies. These things are all part of the fabric of my existence every day, but not something I see reflected outside of myself save the once in a while passing on the street of someone I suspect has PD. But maybe just a sore ankle. Or Parkinson’s. Who knows.
But at the WPC, I am at home in a way that I never find elsewhere. There are people from all over the world, Canada, UK, Norway, Spain, Nigeria, Australia, India, Ireland, all coming together to learn more about treatments, research, and hopefully a cure for this strange life-sucking ailment.
I know the likelihood of a cure in my lifetime is close to zero. But in the meanwhile, coming together with others who experience this oddly terrible disease gives me the refueling I need to keep pushing forward through the difficult days. I remember people like Linda Olson, a physician who lost 3 limbs to a tragic accident, then went on to develop Parkinson’s. Or Matt Eagles, who was diagnosed at age 7 and now in his 50s is an artist, a husband and a dad. Both are incredibly positive, inspiring people. And so many others who inspire me in all that they do in life, and for the PD community. The friends I have made over the years, the warmth in this community is incredible. The congress itself is a place where I can walk up to pretty much anyone and start a conversation that will immediately dive deep below the surface to topics like Deep Brain Stimulation, parenting with PD, deciding end of life issues, all those light conversation topics.
I sat around a table at the conference with two men one from Canada, one from the US, and a younger recently diagnosed woman who is a mom of two young kids from Norway. We had a long conversation about deep brain stimulation (the two guys and I had been through it). These moments, these conversations are what make the conference so great – connecting with others, giving and receiving support. I remembered what it was like for me at my first congress 10 years prior in Montreal at the WPC 2013, meeting others with Parkinson’s for the first time. I was scared but also hungry for information about what this meant for the course of my life. I could see her doing the same, and also I could see how far I had come, and how I might keep giving back to those who had given to me. These moments are what make the conference so great
My 10-year anniversary of being diagnosed fell appropriately on the very first day of the conference. I was diagnosed on July 3rd 2013 by a neurologist who turned out to also be one of the original founders of the conference. When he gave me my diagnosis, he said, “Take charge of your disease, Don’t let it take charge of you”. And then he said, “Go to the World Parkinson Congress”. Better advice I have never received. So off I went 3 months after my diagnosis with my 11 month old in tow, to Montreal for the 3rd WPC. Since then that 11-month-old has grown up. She is now 10 years old, and this year, had a chance to volunteer at the conference. Wearing her purple volunteer shirt, she was so proud to help, and to tell people where to go. A long-standing tradition of the closing ceremonies of the conference is for the volunteers (all 130 of them) who help out throughout the conference to stand on either side of the departing attendees and to clap for them. It is an amazingly moving ritual, and helps to consolidate the feelings of inspiration that the conference imbues in everyone already. This time was extra special though; as I was walking out, I came upon my daughter clapping for each of us. I felt that she had become a part of the WPC family, taken in by all her WPC aunties and uncles, buoyed up by the many people around her as she lives with Parkinson’s in her family. It is hard to express the depth of my gratitude for this conference – for what it has done for me, my family and so many others in bringing our community together.
Rebecca Miller, PhD, has attended the WPC as a participant and presenter. She lives with Parkinson's disease. She is currently Assistant Professor of Psychiatry; Director, Peer Support & Family Initiatives, CMHC at Yale School of Medicine.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®