Thousands of researchers, clinicians, people with and affected by PD descended upon Barcelona last week for the sixth annual World Parkinson’s Congress (WPC). It was my first and I was thrilled to take part. I’ll give a broad overview here - please know I could fill pages with more details as it was a deeply immersive experience.
My flight from San Francisco to Barcelona was a “red eye” that took about 12 hours and crossed nine time zones. I don’t sleep well on planes, so my eyes were well reddened by the time we arrived late on Sunday afternoon.
Monday was an “open day” to orient myself. This is the most difficult position because I had so much desire to connect but wasn’t sure which way to turn first. I reached out to several people I thought would be there - though I was well aware travel plans are often in flux. Judy Yaras of Parkinson's Community of Los Angeles invited me to join her and her travel partner, Travis, for an exploration of Guell Park. I accepted, only to find the tickets for the time she was going had already sold out. I decided to adventure into downtown Barcelona to see what I could see via public transport. It was a cacophony of subways, busses, construction, crowds and a finicky GPS with a draining battery that had me lost for most of the day. Suffice to say Barcelona is a beautiful city with an extraordinary, vibrant culture including delicious food and stunning architecture. But that was not my call for this adventure - I was here to meet, listen to, and share as much as I could about PD over the next several days.
On Tuesday, “Day Zero” officially in the WPC calendar, I attended several seminars including a panel discussion featuring Larry Gifford, Tim Hague, and Sharon Krischer. The power of storytelling in PD was brought forward - and I did my part to Yes, And that. I attended a session led by Bas Bloem - he suggested supplementing dopamine with “hopamine”. We discussed support groups - the opportunities they present and the challenges they represent, specifically those that tend to descend into “worst case scenarios”, therefore driving away the “hopeamine”.
The Opening Ceremony was beautiful, with thousands of attendees in a vast hall treated to displays of song, film, dance and a gorgeous speech by Connie Carpenter-Phinney. The themes of hope, community and advocacy, sprinkled with “no easy answers”, was emerging. It was a Call to Adventure for all of us.
While it was a fantastic day, I began to feel quickly pulled in too
many directions. It is very important to have a game plan or at least set some boundaries when attending something as vast in opportunities as the WPC. One survival technique for me was to workout every morning. The gym was lackluster and the beach was across the street. What was I doing in that sterile box!? I jogged over to the beach and found a vibrant, Venice Beach-like community working out while looking out at the beautiful Mediterranean Sea. The only thing missing in the water, to me, were some waves I could ride. I have a deep affinity for that energy. Even though the sea was still, I very much wanted to go in the water - but I was pulled internally to get to the conference out of fear of missing out.
There were many popup moments that one just can't plan for, too. Like running into my friend, Polly Dawkins from the Davis Phinney Foundation and enjoying a delicious yogurt with her. Or reuniting with Ruby Rendon of the Muhammad Ali Parkinson's Research Center, who was a volunteer at the WPC, and was kind enough to get Larry Gifford and me out for a talk on the values of improvisation in Phoenix in February of this year. Or Bruce Plotsky of Hope Soars in Albany, NY, whom I met via an online presentation I gave for their group in March of this year. The WPC had the effect of shrinking the distance between all of those phone and Zoom calls over the past few years - we were now, suddenly, all three dimensional people to, with, and for each other.
On Wednesday morning I attended a yoga class at the WPC, one of the many regular fitness options they had. It was a great reset and “yes, and” to my weight training and jogging. I then went to a round table for newly diagnosed people and Connie sat with us. It was a beautiful, intimate setting. I then went down to the exhibition hall to get a lay of the land; there were conference posters, exhibitor booths, a stage with ongoing discussions and even a flash mob I was lucky enough to take part in.
My efforts as a leader began in earnest when I hosted a mixer for the Young Onset Parkinson’s Network at a hotel across the street from the conference. I’ve recently been elected to their board and was honored to stand in for YOPN leader, Anna Grill, who had had a surgery that kept her from attending. We had an excellent crowd and you could feel the importance of stepping away from the conference hall. Conversations flowed easily over drinks and tapas.
Thursday morning I doubled down on my selfcare, not only working out at the beach, but going for a swim afterward. The water was warm, clear and calm. The salt content is clearly high, too, as I was able to float with almost no effort.
I attended a few more exercise classes (Shouts out to Nina Mosier of Power for Parkinson’s and Anna Kharin and Laura Douglas of Neuro Heroes) as the energy was a better fit for me than the research forums. After 3.5 years in my PhD studies going over academia and research, it’s clear to me that the best place for my talents right now is in the clinical setting - working and playing with the people that need quality of life improvement today. And that’s exactly what we provided in the “Jam for Joy” improvisation session in the
Support Group Lounge on Thursday - thanks to Clemmie Pizzilo of PMD Alliance for making that happen! We had about thirty participants including people with, affected by and serving the PD community, in a one hour session where they laughed, connected and felt their PD symptoms lift.
That led into a fantastic night where Dan Dumsha of Tightrope Theater presented six people with Parkinson’s improvising in a local theater in front of a raucous sold out audience. My job was to warm the crowd up and I had prepared about 10 minutes of games. Within two minutes it was clear the crowd wasn’t just warm - they were on fire. I quickly turned it back to Dan to get the players, the real stars of the show, out on the stage. Peter Jarvis, Larry Gifford, Shabbir Latif, Clara Kluge, Miriam Bram and Geoff Cohen took the spotlight in person for the first time as a group - they had been playing online collectively previously. They were masterful and the crowd roared with delight with everything they played with, from Australian bicycles to a new drug (discovered just that night!) that helps with swallowing large and small items.
Finally, my film, Boys of Summer: Short Stop screened on Friday in the WPC Film Room. We had a group of over 40 wonderful attendees who were kind enough to sing happy birthday to my 14 year old son, Giuseppe, who stars in the film, but was celebrating back at home. This was the first time I wasn’t around for one of his birthdays, so this was a gift to me, too.
The closing ceremony wrapped with a fantastic drum presentation that had the entire crowd playing along. We felt the rhythm of these magical four days come to a natural and satisfying close.
On my final morning, I decided to take one last look at the city. I jogged 5km to the Arc de Triomf. It was a fitting metaphor for my week. I then ran past the Cathedral of Barcelona and was stopped in my tracks as the 8am bells rang out. And as I finished along the coastline heading back to my hotel, I saw a swell had finally come in. I stopped off at a beach near my hotel and joyfully got tossed around in the surf. I rode a couple of waves and felt that amazing connection to the energy they provide.
People have asked if I thought it was worth it. After all, it was very expensive to get there, stay there and take part. I also missed out on delivering classes to my groups back home and my son’s birthday. Even with all of these considerations, the answer is yes, and...I’m fortunate to have students, a son and family that understand the value of showing up to a networking and, potentially, life-changing event like this.
I do think improvisation and storytelling are on more PD radars after this conference. I’m also more sure than ever about their power and importance to affect positive change in this community. Gracies, Barcelona and WPC! I look forward to the next - wherever that will be.
Ready to play? Sign up for our next Jam for Joy here.
Or become a student in the next round of the Day One: Parkinson's Prison and the Hero's Journey to Escape to explore and learn how to tell your story to help us End Parkinson's disease!