An interview with Christopher Sutphin on Advocacy through Tik Tok on July, 12, 2023 by George Ackerman, Ph.D, J.D.
Biography
Amidst his slight southern drawl, you hear the commitment: to family, friendship, and advocating for PWP. You also hear the intelligence- the fascination with the pathology and uniqueness of the disease he’s fighting, and the wonder… at the randomness of it all in a vast universe and yet here we all are together, friends that have become family, fighting this disease head on.
Chris has a website called Parkie.tv – it’s still in its infancy, mostly due to the apathy common to PwP (Person with Parkinson’s) that he listed as one of his PD nemeses, but there’s already some great content – and more coming! In addition to the #parkinsonslookslikeme videos, he also has a newer series called “Real Talk,” which is a live recorded round table discussion of issues related to living with Parkinson’s more geared towards things we don’t discuss in polite company.
Please tell me a little about your background and how you get involved in Parkinson’s awareness and hope for a cure?
Living in a rural area, I quickly realized the lack of local support groups. Granted this was near the start of the COVID pandemic, so what groups were local had pretty much stopped in person meetings. So, I turned to the internet, starting with Facebook I found and joined several groups for Young Onset PD. The interaction was good but not what I was looking for. Next, I turned to TikTok (GASP!!!) And once I trained the algorithm to ignore the dancing teens, I found a community of Parkies that I now consider my family.
What type of goals do individuals with Parkinson’s have when viewing your social media advocacy?
I truly feel that the best thing we can do is share our stories, learn from each other, and do our best to pass that information to the next person and the medical profession.
What effect can it have on an individual with Parkinson’s?
Sharing our stories, so very important.
What would you like to see as a future goal for your advocacy? To borrow from the MJF Foundation, I do not want to have to keep advocating, I want to put myself out of work.
What events do you participate in?
We (The Gray Strong Foundation) have a weekly online support call that is so amazing!! Very informal and while we do try to stay on topic, after the first hour, all bets are off.
How does this also assist the caregivers?
Currently working to mirror the parkie group to a weekly call for care partners #parkinsonslookslikeus
How can someone get in touch? What is your website?
parkie.tv or graystrong.org the best email for me is chris@parkie.tv
The Gray Strong Foundation
MOVING FORWARD WITH PARKINSON’S
Gray Strong Foundation helps individuals #moveforwardwithparkinsons by providing medical needs and program resource support for Parkinson’s patients and their families. Founded by local EMT, Eric Aquino, Gray Strong Foundation offers much needed support and Parkinson’s disease (PD) awareness to the Lehigh Valley and surrounding areas via fundraising initiatives, @tremblingEMT social media tips and podcasts, medical resource information and exercise programs. Aquino is no stranger to generating successful non-profit organizations as a former chapter President of a local Pink Heals chapter (easily recognized by their pink fire trucks) and current Michael J. Fox Foundation Ambassador.
For more info see https://www.graystrong.org/about-us
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
Don;t Panic!! And that is not a typo, the semi-colon is there for a reason.