Building Community with YOPD Connections - PMD Alliance

We are thrilled to announce our newest online community offering, YOPD Connections. Launching Tuesday, November 10th, this peer discussion group will met twice and month and be facilitated by Brian McElwain, PhD, a person living with Young Onset Parkinson Disease (YOPD). I sat down with Brian to learn more about him and his plans for the group.

Why are you beginning YOPD Connections?
“You Can’t Exercise Your Way Out of Poor Social Connections,” that’s the title of a blog post by Dr. Sarah King, a physical therapist who specializes in working with people with Parkinson Disease.  We often hear that “exercise is medicine” as that’s the conclusion reached by innumerable research studies demonstrating the powerfully positive effects of various kinds of exercise for those of us living with Parkinson Disease, but the research of Dr. Laurie Mischley demonstrates that the quality of our relationships is perhaps even more important. Dr. Mischley found that the best predictor of the progression of a person’s Parkinson Disease symptoms was their answer to the question, “Are you lonely?” Those who answered “yes” fared poorer while those who said “no” fared better. Answers to this simple question were more strongly correlated to disease progression than any other factor including demographics, medications, diet, and exercise. “If you are exercising six days per week, 30 minutes at a time, and you are lonely, it’s a wash,” says Dr. Mischley.


For younger folks who are trying to manage careers, who are parenting children, and who have responsibilities for their own parents along with the many challenges of managing the widely varying effects of this disease, prioritizing the quality of their relationships can seem, well, self-indulgent. Many with YOPD will find themselves experiencing the loneliness of living with a disease that more typically strikes those of their parents’ or grandparents’ generation. The physical distancing and isolation that are necessary components of managing the current COVID-19 pandemic only exacerbate such loneliness.

What do you hope YOPD attendees experience?
My hope is that those who participate in and help build this online community will no longer feel alone in their experience of YOPD. They will meet and get to know others with YOPD that they otherwise would not have had an opportunity to meet. We will talk about our experiences in ways that allow deep resonances between us to be felt and that will provide grounding for meaningful relationships to develop. We won’t be content with mere chatter that masks loneliness only as long as it lasts. Truly dispelling loneliness requires that we feel understood, that we “feel felt” at a deep level. When that happens we can build relationships that nourish us for the long haul.
What is your favorite quote and why?
Wow. That’s a hard one. At various points in my life I have collected quotations. The first one that comes to mind in the context of this group is: “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” That’s from Maya Angelou. Another great one from her is: “I don’t trust anyone who doesn’t laugh.” Of course, sharing a moment of true belly laughter with another person (or a group of people) requires a shared experience of safety and trust. I could go on and on with Maya Angelou, but that one reminds me of another from Victor Borge that I truly love: “Laughter is the closest distance between two people.” That may be just a restatement of the previous one from Maya Angelou, but what it comes down to for me is that finding a shared sense of humor is a huge part of connecting with others. How many was that? You asked for one, but I couldn’t stop there. So I cheated. “Better to ask for forgiveness than permission,” right? YOLO!
What’s your favorite way to spend a Saturday?
Well, I’m a bit of a pickleball fanatic, so it would have to start with some pickleball with friends in morning. Then I’d spend the afternoon exploring some new hiking trail near Tucson with my family in afternoon and I’d definitely have my camera with me so that I could capture a few shots of one of our epic desert sunsets. I’ve always loved sunsets–I’m not much a of sunrise person– and I can’t believe that it took me fifty years to discover how amazing sunsets are here in Tucson! Then we’d meet up with some friends for dinner probably over some Neapolitan pizza fresh from a wood-burning oven or maybe some great Mexican food. If you need some recommendations for your next trip to Tucson, let me know…

After way too many years in higher education, Brian McElwain earned a PhD in clinical psychology. By then, it was too late to leave, so he found work in university counseling centers. Over three decades, Brian developed expertise in the practice of individual and group psychotherapy, clinical supervision, relaxation skills, mindfulness, and the treatment of trauma and grief. Brian’s thinking about his work was guided by his interests in narrative therapy, existential phenomenology, racism, and interpersonal neurobiology.

At age 41, Brian was diagnosed with Parkinson disease and ten years later he decided to retire in order to devote his dwindling time and energy to pickleball and photography.

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