The following is a guest post written by Gina Lupino. Follow her here on LinkedIn or Twitter.
Last week, I attended the Inaugural ASU-Banner Neurodegenerative Disease Research Conference in Phoenix, Arizona where I listened to scientists and clinicians present their latest research on neurodegenerative diseases.
The conference organizer, Prof. Jeffrey Kordower, invited me to speak at the conference and share my story as a person living with young onset Parkinson’s disease. It reminded me how important it is for scientists and clinicians to spend time with those whose lives their research affects to remind them what the objective of their work is – to improve the quality of lives of people living with neurodegenerative diseases.
Our interests matter, but we must be able to communicate them properly. Otherwise researchers will not know what to work on or understand how to help us. The only way to do that is by putting ourselves out there and making our voices heard at such events.
Raising awareness about YOPD has been a fundamental part of my role as a patient advocate. I do this in many ways – both informally and formally. Informally, I live openly as a person living with PD. I try not to hide or suppress my symptoms anymore. When my legs cramp while walking forward, I walk backwards. I request wheelchair assistance at airports. And I no longer hesitate when I feel a need to cancel a meeting with colleagues or an outing with friends.
Formally, I visit research centers, attend conferences, meet with government officials, and mingle with researchers, clinicians, and business people in the field. I make my presence known that I am in the room when they discuss patients’ and what they think our interests are.
But raising awareness about YOPD extends beyond merely telling someone that it exists or showing my tremor, dystonia or dyskinesia. It requires creating environments for researchers to see the world through our eyes and walk in our shoes.
Understanding what it means to live with PD means going beyond just the physical symptoms and getting to the core of the mental and emotional struggles we face daily. These are crucial aspects of the grind these diseases impose and must be faced by all who strive to come up with solutions for the problems we experience.
At the conference I was given 20 minutes to get a room full of clinicians, scientists, and graduate students to experience some of this. I surveyed the room and asked the audience to remember a road block they faced that forced them to take a detour and how that made them feel. “Frustrated.” “Angry.” “Like the whole world was plotting against me.” ”Stressed about being late to my destination.” “Anxious.” These were some of the words used.
I then asked them how they felt when they took that detour. Again, frustration, anger, and anxiety, but now mixed with fear, confusion, and feeling lost or alone. Though one audience member did add “surprised” and “happy”, because they discovered something that they would never have seen otherwise. The informal survey spoke to our common experiences and emotions when a sudden, unexpected, interruption diverts us and we have no choice but to tread a new path.
However, what was difficult to convey was that Parkinson’s doesn’t come a roadmap. We drive forward into darkness, scared of the unknown, of what we’ll encounter and of what we’ll become. We try to be thankful for what we have and stay positive, despite all the avalanches and earthquakes we know will block us as we go.
Sometimes we crawl up into a ball and cry, mourning the loss of friends we made who died along the route and missing the days before we ended up here. In those times we dig deep within and dredge up what courage we have so that we can keep driving forward.
Sometimes we notice fields filled with beautiful wild flowers we pass along the way. Pristine mountain tops we’ve traversed or glistening lakes now in the rearview. We meet others ahead of us on this detour, hear their stories, learn about the good and the bad that awaits us, knowing that we will one day pass those same tales onto others. We acknowledge and appreciate the good days and try to be patient as we wait for the bad days to pass.
When I meet people with YOPD, I feel understood. Now the challenge we have is how to communicate that feeling to those who will never walk in our shoes, but who want to help. How can we get all those eager scientists, engineers or clinicians to feel that grief, that fear, that loneliness, but also that sense of gratitude and hope that I see in the eyes of my fellow YOPDs?
While I can’t say that my mission is now accomplished, I do hope I helped move the needle a bit in that direction through my involvement last week. While there are still many mountains ahead of us we must climb, I am glad to know a few more people who will do what they can to help others like me climb it as well.
For those who want to hear more about Gina’s story I highly recommend watching the Mediflix series, Gina in Motion...
Great stuff, Gina. Yes, the fundamental question: How do we make our voices heard? We mostly all want the same thing, PD or no PD. To be understood, appreciated.
Give understanding and appreciation and it will almost certainly come back. But don’t we deserve it more, or first?
We gotta lot of listening and understanding ahead of us…
There is no such a thing as detour in life. This is your regular route.
Exactly. I read this post and I’m thinking: “yes, that’d be me”. Thank you! 🙂