An interview with Ashley Asti, In Stories, We Find Connection.
Biography
Ashley Asti is a storyteller and writer at Parkinson & Movement Disorder (PMD) Alliance. She has written a handful of books, including At the Threshold and Up: A Love Letter to the Down Syndrome Community. She lives in Raleigh, NC, with her spouse, three cats, and her growing collection of plants.
Can you tell me more about your Advocacy?
I use the power of storytelling to amplify the voices of the movement disorders community, to spark connection and propel change, and to remind everyone impacted by these diseases that they’re not alone. Specifically, I write short- and long-form profiles of people within the movement disorders community, as well as record video clips and full-length conversations.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My connection to the Parkinson’s community feels like serendipity. In 2021, I was looking for a new job. When I landed on a posting for PMD Alliance, I knew very little about movement disorders. I had no personal connection to the community. But even in a job description, PMD Alliance’s heart shone through. I knew it was where I belonged.
What type of goals does individuals with Parkinson’s have when seeing your Advocacy?
Sharing the intimacies of your story requires vulnerability. People continue to let themselves be seen in this way because they want to make sure that others who may be struggling or uncertain find a light. Often, people tell me, “If my story makes a difference for one person, it is enough.”
What effect can your Advocacy have on an individual with Parkinson’s?
I hope the people who share their stories with me feel seen. And I hope these stories comfort, encourage, and connect those who hear them. I also hope these stories serve to stoke change—that they provoke righteous outrage when appropriate. That they call us into our humanity and remind us that we’re connected. That they compel us to use our unique skills, time, and energy to advocate for a more just healthcare system that honors and supports patients and providers.
How does this also assist the caregivers?
Every voice belongs, including those of caregivers. Their stories deserve to be told, too.
How can someone get in touch? What is your website?
PMD Alliance’s website is pmdalliance.org.
If you want to share your story, you can email me: ashley@pmdalliance.org.
On a personal note…
I want to add that as much as my job is to witness the movement disorders community, I have felt seen and nourished by them, too. A couple years after I started working with PMD Alliance, I got diagnosed with my own chronic illness. It has upended my world. But, slowly, I am learning to be with it. Not to give in to it or give up, but to reclaim joy, right where I am. To grieve. To make peace. To connect. And I have learned so much of this from talking with the Parkinson’s community. Every conversation I have with people impacted by this disease fills me. On the days when I feel most exhausted, the people in this community have wrapped their arms around me simply by letting me witness their journeys, their fears, their hopes, their love. I am in awe. And so, so lucky.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“Healing is figuring out how to coexist with the pain that will always live inside of you without pretending it isn’t there or allowing it to hijack your day…It is learning to carry what lingers.”
—Suleika Jaouad
TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
Support https://www.togetherforsharon.com/shop/
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