Going to the World Parkinson Congress for the first time can be an exciting challenge for a person with Parkinson’s disease. On the one hand, there is so much to see and do it is almost like a Disneyland for People with Parkinson’s. On the other hand, how do you fit everything into 3,5 days? Somehow, executive director Elizabeth (Eli) Pollard and her team managed to bring together an amazing international conference that is inspiring, educational and welcoming to all in the Parkinson’s community.
This was my third time attending and my husband, Mr. Twitchy’s, second. As I look back, it is interesting how my participation has evolved from participant to actively involved in the WPC.
At the first WPC I attended in Portland, 2015, I started out staying close to my two friends from my Los Angeles support group, Naomi and Clara, as we attended every session, afraid we might miss something (FOMO: Fear of Missing Out). The most important thing we learned was that this is a special group of people that thrive on connecting with each other. We all took that new energy home with us to find ways to better connect with the people with PD at home.
In Kyoto three years later, we strengthened our connections with the Parkinson’s community and became more involved in the Congress. Our husbands joined us this time to see what we were so excited about. Naomi created an amazing installation that became the centerpiece of the Exhibition Hall: 10,000 origami cranes with messages of hope from around the world, hanging from Japanese umbrellas. An amazing feat! Clara put together a Crane Dance project and by this time, the Twitchy Woman blog was established and I was an official blogger. We spent a lot more time in the halls connecting with people (I think the Hebrew word is schmoozing). And people were seeking me out, because of my blog and the work I had done on a Women and PD project through the Parkinson’s Foundation.
The Pandemic Changed Everything
The pandemic took this momentum in a different and unexpected direction. With everybody locked down, what had been a small and occasional LA support group evolved and then exploded into our Sundays with Twitchy Woman zoom sessions with people joining, literally, from around the world. We had guest speakers from medicine, exercise, physical therapy and even comedy, and evolved further into developing a one-on-one mentoring program for newly diagnosed women with Parkinson’s. Encouraged by our success, several of our women donated funds to underwrite the congress registration for 9 first-time attendees in Barcelona. Other women from our group joined us there, along with their care partners and friends. In the end, there were almost 50 of us in Barcelona, most of whom were first time attendees.
Clara returned not just with a dance project, but with an improv comedy group, while I was on a pre-conference panel as a patient advocate and produced a couple of posters about Twitchy Woman, one of which was on a poster tour. Sadly, Naomi could not join us this time and as good as it was, it just wasn’t the same without her; kind of like missing a Musketeer).
The View from the Uninitiated
For those attending for the first time, the WPC was more than they could possibly have imagined. Although many had attended other conferences in different industries, the consensus was that this was the most inclusive, international conference any of them had attended. Most important, it was all focused on them.
Everyone I spoke with thought the opening ceremony was a very positive, inspiring experience. They loved all the videos, and the surprise cameo appearance on video by Sir Paul McCartney was the evening’s highlight. Everybody felt not only welcomed, but an important part of the “whole movement to figure this thing we call PD out. Very inspiring to feel a part of something this big.” (Bonnie)
There were so many different lectures, round tables, exercise programs and more, that it was sometimes difficult to decide what to do first. Most talked about FOMO. Who knew that there could possibly be so many interesting programs about Parkinson’s Disease? Some were quite technical and hard to follow for many of the first timers. Many enjoyed the non-scientific parts of the WPC more than anything else. Table Tennis was a big hit. So were the other wellness demos (boxing, meditation, etc.). There was so much to see and learn. As Linda S. stated: “The Congress gave me the opportunity to have a wide variety of information all at one place and one time.”
The Exhibit Hall was also a highlight. There were many more exhibitors this year with alternative therapies for PD, including virtual reality programs, red light therapy and numerous exercise programs in addition to Parkinson’s organizations from everywhere. We could hear from authors in The Book Nook and participate in informal presentations at lunch time.
Several of the women in our group
Photo by Joel Krischer
From Patient to Advocate
Many of the women left Barcelona feeling empowered. They had learned a lot about the changing world for People with Parkinson’s. For the first time there were sessions that focused on women’s issues at the WPC. Many could not wait to share what they learned with others in their community when they returned home. If they were not patient advocates before the WPC, they definitely were when they left 4 days later!
This summary from Joanne Ruby, one of our scholarship recipients, beautifully sums up what I heard from many of the women.
“I was thrilled to learn about the WPC2023 from Twitchy Women last fall. And the invitation to apply for a scholarship sparked joy. I thought, if I have to have this disease, why not get to Barcelona on your 40th anniversary where I had actually honeymooned? I'd heard of the Kyoto conference through PD Active community in Berkeley, and knew it felt right.
As a retired clinical social worker in an academic medical center (UCSF), I've attended conferences, but this was an entire other experience. This time it was me, my cohort, my lived experience. And this time it was feeling moved to the core. This time it was learning about new findings and treatments from medical professionals and scientists who speak with ultimate authority, as people living with Parkinson's. This time it was meeting young women reeling from diagnosis, as they are building their career and family.
I am returning as a patient turned advocate. Passive to active. Eager to share resources with women with YOPD and create women's support groups. Burning to inform medical professionals, MDS and neurologists and internists that we need them to ask women about their symptoms as related to hormones - menstruation to post menopause. This disease has been defined and studied from the male perspective but that is now changing - due to the activism of women with PD - and our clinicians must inform female patients of what we know and what we don't know. We need research on the impact of the disease on women across the lifespan so that we women, with YOPD and with issues later in life, can live life to our fullest.
I will go to the next WPC. It was more than a shot in the arm of hope. It was transformative to experience the energy and power of scientists and physicians along with the community of artists (filmmakers, musicians, dancers, muralists, writers) all living with PD sharing their brilliance and light. 4000? of us, together in the city of towers. Jonny Acheson, an artist and emergency doctor in the UK living with PD, evoked Gaudi's achievement and influence through video, closing the plenary on whether biological subtypes in PD exist. As Gaudi built the inconceivable, so too is this community discovering and building what we didn't know was possible. Beautiful and palpable, I cried.”
Finally, when asked to name their favorite program, everyone singled out Paul Mayhew-Archer’s The Funny Side of Parkinson’s on Friday at lunch time. After 2,5 days of lectures, it was definitely the right thing at the right time. Unfortunately, I missed out on that one because there was another meeting that I wanted to go to. Yes, FOMO kept us all going from early morning to late afternoon. If only we could have had another three days to experience everything.
The Take Away
One requirement of every speaker at the congress was to state a take-away from their talk. In that spirit, I think that the take-away from the entire WPC this year was this:
Pretty much anybodywho wants to commit to be involved with the community can find a way to do that. And for those that do, the return is so much greater than the effort expended.
Overall, it was a lot of fun. Just being together in person, was the most important thing for all of us. We are looking forward to the 7th WPC which will be in 2 years, with the location still a big secret.