Meet Vanessa Reiser—a videographer and photographer who uses her talents to advocate for Parkinson’s awareness. Her latest project sharing the stories of those with young-onset Parkinson’s, The Only Day We Have, brought Vanessa to the Parkinson & Movement Disorder Alliance ALL-IN Summit to interview keynote speaker Jimmy Choi and participants of the Summit.
In a moment of youthful exuberance, I volunteered to speak with her.
My session was after lunch. Entering the room, I expected the anxious and tremoring Parkinson’s Lori to be the interviewee. Instead, I was calm. No anxiety. No tremors. I was comfortable sharing my story. It was the same one I had shared numerous times, but this interview felt different. Talking to Vanessa helped me to convey my experiences in a way that was uniquely my own.
Vanessa is an artist, eloquently giving life to our stories. Her compassionate style provides a window into parts of lives we lock away—the trauma of a Parkinson disease (PD) diagnosis, our fears, and our dreams. I shared my account with feeling and vulnerability. We spoke about diverse topics, including parenting, guilt, and fear for my future.
Ending the interview with a question on my faith and hope triggered a wave of emotion that I was not expecting. It was cathartic, and I shared a quote from a book by Sarah Young: “Hope is the golden cord connecting you to heaven.” We started the interview as strangers and ended it as friends.
The week following, Vanessa graciously answered questions via email for me to share with you.
LD: How did you become affiliated with the Parkinson’s documentary?
VR: I was fortunate to have met my co-producer Allan Cole when working on a documentary about Parkinson’s in 2019 for Connecticut Public Television. Allan and I both live in Austin, and we became fast friends while filming for that project, Empowered by Parkinson’s. I approached Allan in the spring of 2021 with the idea of making another documentary about Parkinson’s, focusing exclusively on young-onset.
LD: Can you tell me a little about the documentary, The Only Day We Have, and why you chose young-onset Parkinson disease (YOPD)?
VR: YOPD seems to be a unique disease within the umbrella of Parkinson’s. Because it starts when people are in the middle of their lives (sometimes even younger), the disease’s physical, emotional, and psychological effects are inevitably experienced differently than those diagnosed later in life (late-onset Parkinson’s).
There are many factors to consider when one has been diagnosed with a degenerative disease. How do I share this news with my family? My employer? My friends? How will it affect my career? How will it affect my kids? What will my daily life look like? Can I afford to have this disease? What’s the best course of medical treatment, and whom do I trust to advise me on this? In essence, what is this new life I have in front of me? We want to address these questions and show the experience of those impacted by young-onset Parkinson’s by bringing this disease to life and showing it in all its dimensions.
LD: Who is the intended audience?
VR: Mainly people who are newly diagnosed with YOPD and their care partners, but also the general Parkinson’s community. We hope it reaches a broader audience and provides important information about Parkinson’s to those who might not know much about it—to show that it’s not just “an old person’s disease” and is challenging to diagnose.
LD: Did a specific story resonate with you?
VR: Maria DeLeon’s story of being a movement disorder specialist diagnosed with YOPD in her 30s is very compelling. It took her a long time to get a formal diagnosis, mainly because her diagnosing physicians were skeptical of her version of the story. The doctors were her colleagues in many other ways, but when it came time for her to be a patient, they did not believe her experience of her symptoms. This shows me how difficult this disease can be to diagnose in general, but specifically, for someone of any minority status, it is a more significant challenge.
LD: What do you want people in the Parkinson’s community to know about you?
VR: I love telling people’s stories. I’m a firm believer that everyone has something to share with the world, and in telling their stories and being given an audience to hear them, we can build more empathy and compassion in the world. It’s all about the power of vulnerability.
I am grateful for Vanessa and others like her. In genuinely sharing our stories, they spread awareness to others while inspiring those of us whose lives they touch.
Lori was diagnosed with YOPD eight years ago. Now, she is a published author with Parkinson’s News Today. Her column, “Life, Lemons & Lemonade,” is a collection of essays written as a person with Parkison’s. She is also a PMD Alliance Ambassador. Learn more about our ambassador program here.