Widening the Arms of the PD Community
WPC 2019 in Kyoto… If you were there, you recall the insanity; you remember feeling totally overwhelmed and exhausted; and you recall the sweet medley playing inside you when surrounded by so many different kinds of people with connections to PD. If you weren’t there, you probably heard about it from friends who went and navigated a country in which polite people won’t often speak English but will pull out their Google Translate App in a second, to try to help a clearly lost tourist. Imagine if, like me, you were diagnosed with PD nearly a decade ago, but it was the first time you went to a World Parkinson Congress.
The truth is that, when living with the cognitive slowing that accompanies PD, I often felt so overwhelmed with keeping up my work productivity that it took a while for me to calm down enough to make the necessary cognitive shift. The shift involved identifying that PD is not something that I happen to ‘have’ but rather: I am a Person Living with PD. The latter view required me to integrate the diagnosis into my view of myself, my limits and my possible future. As a former self-defined Superwoman who previously claimed that she thrived when under stress, it was a tough shift.
The cognitive shift was encouraged by a couple of things: First, I knew I owed a huge debt to PwP who helped and supported me in my early PD education. One of those people, a friend well before either of us confronted PD, died last year due to advanced complications of young onset PD. Second, perhaps I could “pay it forward” a bit, since I discovered that I was somewhat unique as a PwP: I spent about 35 years in the world of clinical research, pursuing and receiving NIH grants for conducting research on chronic pain conditions with complex etiology. Moreover, as an epidemiologist, I was trained in the fine points of research design. I became fluent enough that I taught chronic disease epidemiology and biostatistics to graduate students. So, moving from being a cautious (and then admittedly an often argumentative) presence on a couple of PD-related websites and FB groups and then narrowing my focus to the Parkinson’s Research Interest Group (PRIG), I have slowly become a more frequent presence at in-person PD meetings. Lately, as I plan a schedule of events to attend, I find myself less interested in going to those other academic/science meetings that I used to love. WPC and smaller meetings that share some of the special characteristics of WPC (especially those encouraging communication among clinicians, research scientists and PwP) open my heart in a different way than my old research meetings.
At PD meetings, I am with my community, sharing with others what I have learned to date from inhaling and absorbing the personally addictive PD research literature. As a research scientist, I love to talk about the strengths and limits of the newest research studies and help to translate it to those without a background like mine. I try to caution those who often would prefer to hear me talk about the details of my daily, prolonged endurance exercise regimen and markedly slow PD symptom progression over a decade: I am not an experiment or a controlled trial. I am, at best, a case report. Who knows what my symptoms would be like, if I didn’t exercise this much every day? I may have a constitution that makes my body respond unusually well to high intensity exercise. Maybe it’s the exercise, combined with nearly 50 years of a “vegetarian going vegan” diet. Maybe it’s my structured approach to maximizing sleep time and regularity. Or, maybe, none of the above.
In Kyoto, I remember looking out at the sea of faces during our panel discussion on Advocacy and Activism in PD. As it was apparent to me during my smaller pre-meeting sessions, it struck me again during the large and open discussion on Patient Advocacy that something important was missing. Of course, a larger than usual number of Asian faces attended WPC2019 than other PD meetings I attended, given the meeting’s location in Kyoto. But the rest of the rainbow of diversity that I see as I traipse along my home streets of NYC was replaced by a largely white and upper socioeconomic status group who could afford to attend, with the possible exception of those fortunate enough to receive a travel stipend. Why didn’t I see the spectrum of diversity of people who live with PD? Certainly I didn’t expect to see many late stage PWP there, especially given the long traveling distance from Europe and North America. But why were there so few people of color?
The epidemiologist in me is aware that ANYONE can get PD, young or old (although older folks are much more likely) and people of every color (although African American folks appear somewhat less likely), but no one is immune from PD. Yet, it is clear that WPC attendees were a select group, undoubtedly in terms of income as well as race. This isn’t unique to WPC: it characterizes much of all group PD activities. I see similar homogeneity at support groups, at boxing class, and in online PD groups. The UK-based leader of one large online PD Facebook support group even quipped, “Black people don’t get PD.” Why? He didn’t see them at the in-person support groups he attended. Sorry, but that’s naïve.
This exclusion of the broader spectrum of PwP within the supportive community of PwP troubles me. What about PwP who don’t know that there is a way to connect with medical specialists and research scientists, PwP who might never see a Movement Disorder Specialist and possibly never heard that such a subspecialty in neurology exists? What about PwP who think that their PD symptoms are symptoms of normal aging, or who might believe old myths that levodopa is “poison” and that it only works for five years, so don’t take it until you have no choice? What about PwP who feel alone and isolated and don’t have the resources or energy to reach out to others with PD? Or, what if they are surrounded by family and friends who, even as a mistaken act of love, tell the isolated PwP “you’re doing fine; you look good; it could be worse; everybody gets something and at least it’s not something that will kill you”? What about PwP who don’t know that there is a group of strangers who become friends because of PD? How do we let them know that there are others who started out alone but managed to find this strange and wonderful PD community?
We are a community that forms to fight a common dragon, to understand how we can arm ourselves against this secret slaughterer of heroes, to describe and dissect how this dragon grows and thrives within us, and how –with the help of massive funding—we may one day slay the dragon itself or at least keep it well-caged. We look to the gay community as an example of how a huge public presence inspired major research funding and successfully changed a diagnosis of HIV from a death sentence to a chronic disease. Aside from other major differences between HIV and PD and between groups of people afflicted with these respective conditions, we also differ in that, generally speaking, PwP are not very loud. As a public community of advocates we are fairly small, notable given that PD is far from rare. Yes, despite the tricks that PD may play on our attempts to SHOUT, despite its depletion of our energy and mobility, potential power in numbers still lies untapped. By growing the size and diversity of our community, I believe that we are likely to help those living in isolation with PD. It will simultaneously add to our strength to influence public funding priorities.
Sleepless in Kyoto one night, I wrote a passionate Facebook post about how it is critical to be OUT, if you can, SHOUT if you can, organize regionally and globally, if you can. Weeks later, I still feel the same way. Of course, it’s not possible for many folks with PD to be OUT and LOUD about having PD. Issues of potential work discrimination are real. Explaining what is happening to Mom or Dad can be incredibly difficult, especially if you have young children.
But… if you think you can be OUT in at least some situations, imagine how the opportunity to interact with acquaintances and strangers about PD could help. It could break down stereotypes, provide opportunities for others to ask questions, encourage others with PD to learn that there are resources and places to get support and information. It could increase the size of the community of voices to push for more PD research funding.
I now litter my clothing with rather ugly self-printed buttons saying; “Parkinson’s Disease has Changed My Life. Questions? Feel Free to Ask.” Would YOU wear a button like that? Or would you wear or do something else to invite conversation, with the goal of broadening of our PD Advocacy Community? Sometimes, change can come through a confluence of many small and intimate conversations. If you can find a way, please brainstorm ways to invite those conversations.
Karen Raphael, PhD presented at the 5th World Parkinson Congress in Kyoto and served on the Advocacy Committee for the WPC 2019. She is currently a Professor at the NYU College of Dentistry in Oral Medicine and the NYU School of Medicine Department of Psychiatry.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®