Parkinson's Story Exchange
Produced by Johanna O'Day
There are various researchers who study Parkinson’s disease who have little contact with the afflicted population, or who may not have ever even met a person with Parkinson’s disease. Some pivotal research in Parkinson’s disease is happening on the genetic and molecular level, and these scientists may spend their careers at the bench, isolated from the population that they are impacting.
As a clinical researcher who gets to interact with patients daily, I have witnessed firsthand how having the opportunity to see into the human side of the disease has shaped and fueled my own research experience. Often times, in the dark depths of data analysis, frustrated with statistics or MATLAB code, all I have to do is picture the clinical experiment where a patient could not control his violent tremor, or a patient winced in pain when her arm involuntary decided to whip away from her, and suddenly I am re-energized. I remember why I am here, why I am doing a PhD in Bioengineering and studying Parkinson’s disease. Beyond research motivation, I want to give a voice to the disease to help researchers empathize and further understand who all their hard work is going toward.
On the other hand, there is a host of research on Parkinson’s disease that depends on the participation of patient volunteers. Though informed consent helps patient volunteers understand what their rights are and vaguely what the research is going toward, the actual research results are not easily accessible. Academic and clinical research is published in journals that need to be purchased through costly subscriptions, and is packed with jargon indigestible for lay audiences. From interviewing patients, I have learned that they feel that information is power, but are left in the dark. I want to give Parkinson’s patients a way to see how they fit into the research picture.
Thank you for the opportunity; you are doing valuable work. You taught me every story is worth being told no matter how small. Thank you for that.
I was inspired by people like Peter Dunlap-Sohl (author of the graphic novel, My Degeneration) who shared their story in a creative, tangible way and offered both hope and information to others affected by Parkinson’s disease. I chose graphic art as my medium for conveying relevant research findings as well as the stories of several Parkinson’s disease researchers at Stanford.
I don't want another day to go by without thanking you both for such a unique wonderful experience last Sunday. A great opportunity, one I'll always remember.
— Candace Gaudiani
Want to know more?
Hear the Stories
I was inspired by NPR’s StoryCorps model for story-sharing, and partnered with the NPR’s StoryCorps Legacy project to capture some wonderful stories from Parkinson’s patients. Take a listen to what they have to say.
Candace and Johanna
The Quilt of Life
Kevin and Johanna
How losing control to gain control can change your life
TC and Betty
Connie and Joanne
Bill and Hannah
Terri and Hannah
Finding your Zen
These interviews were recorded in collaboration with StoryCorps, a national nonprofit whose mission is preserve and share humanity’s stories in order to build connections between people and create a more just and compassionate world. www.storycorps.org.
The Parkinson's Story Exchange has been featured in:
The Scope Blog
Graduate student gives Parkinson’s patients a platform to tell their stories