How did the first national Young Onset Parkinson’s Network (YOPN) members meeting go? In one attendee’s words: “It was truly amazing. I didn’t think I would come out feeling how loved and accepted I was. I have a new family!”
And they were not alone in feeling that way: “amazing,” “life-changing,” and “heartwarming” were all words that were regularly included across all responses. Members were clearly overjoyed just to get to meet and bond with others who share their lived experiences. Whether they were still in the prime of their lives or were diagnosed with young onset Parkinson’s disease (YOPD) many years ago, each connection was valuable. “I’ve never met anyone else with young onset Parkinson’s,” and “I’ve never been with so many people like me before,” were also common refrains we heard over the weekend spent in Carefree, AZ.
Our Associate Director of Communications, Phil Giles, was watching from the sidelines throughout the event for people who were sitting alone to ensure no one was left out. “There was only one time I actually saw someone sitting by themself,” he said, smiling. “In my opinion, this was the best event we’ve ever hosted.” He and his partner Lani (who was also our volunteer event photographer) bartended on the final night and asked each person they served drinks to if they would come back if we did this again. Everyone gave a hearty, resounding yes. And many people shared that they’d like to bring their spouses next time, too.
This was one of the least treatment-focused in-person events we’ve put on – choosing instead to concentrate on connection and community bonding – but the resource fair on day one was still one of the most engaged we’ve seen. Exhibitors even remarked to our team about the informed, deep-diving questions they were being asked by the YOPN members. It demonstrated how hungry the YOPD community is to go beyond surface summaries and gain a thorough understanding of the treatments available to them.
From joking about shouts of “RAVIOLI!” from the conference center’s chef to trying out sound therapy or tai chi, people felt comfortable with one another – particularly with expressing their symptoms as they came up. “I didn’t realize how much energy I spend trying to mute my symptoms all the time,” one person told us. For someone with visible symptoms, experiencing them in a group of non-symptomatic people can be quite othering. At the YOPN Retreat, however, attendees wiggled, shook, fidgeted, tremored, stalled, and more, all while experiencing belonging and acceptance from their peers.
“The support groups were so good,” Anissa Mitchell, LCSW, PMD Alliance Chief Programs Officer said. “Very few people had been to a support group before, but several people were so moved that they’re interested in starting their own support group now… It was powerful to see people so open and joyful.” When asked what they wanted more of in the future, discussion groups were a common request.
27 states were represented, with three attendees travelling all the way from Canada to join the festivities. Because of the long drive from the nearest airport to the venue, PMD Alliance provided a group shuttle back on the last day, though few were ready for the fun to end. “I wish it was longer,” shared a participant in their survey, echoing the sentiments during Sunday’s goodbyes, when many people said they didn’t want to go home.
One of our goals for this event was for everyone to make a friend, and we are happy to report we are sending most folks home with many new friends. As for the PMD Alliance team, we left bolstered with renewed passion and insight for the work we do and filled with gratitude for those we serve. Thank you to everyone who attended or helped to make this possible! It’s safe to say this event will be back in the future.
