An interview with Carl Carter-Schwendler on Advocacy through TikTok on July 12, 2023 by George Ackerman, Ph.D, J.D.
Biography
My name is Carl Carter-Schwendler. I was diagnosed with Parkinson’s disease a little over ten years ago at the age of 43. I am retired now on Long Term Disability, but when I was working it was in the tech sector. I worked at Microsoft for fourteen years and Amazon for another nine years. I have been on the board of directors of the American Parkinson Disease Association, Northwest chapter for the past five years, taking on the role of President for the last two.
Please tell me a little about your background.
When I was diagnosed, I wasn’t very interested in finding a support group or participating in the Parkinson’s community. Part of this was just not being a very social person, but the larger part was that I was afraid of meeting people who were much further along with their disease progression than I was. After a couple of years, I joined a Parkinson’s boxing class. Although the class had people in it who were much further along than I was, I discovered that this didn’t bother me as much as I thought it would. I enjoyed the classes, and I liked talking with the other people with Parkinson’s about treatment and symptoms after class.
Apart from a couple of television appearances as part of the boxing class, I still wasn’t involved much with awareness. This changed when my neurologist suggested I join the APDA board. Since then, I have participated in many fundraising events and helped steer the programs we provide for the community.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
In early 2021 I had downloaded TikTok and was enjoying using the app. As Parkinson’s awareness month came around, I decided to do a series on Parkinson’s where I would post a video about a symptom or treatment once a day for the duration of the month. That was over two years ago, and I am still posting. I found that there were more people with Parkinson’s on the app than I ever expected. It turns out that this is the kind of community that I was looking for. I still don’t participate in any support groups but between my boxing class, TikTok, and APDA events, I have found my community.
What would you like to see as a future goal for your advocacy?
My goals are modest. I’d like to expand the reach of my message, especially to disadvantaged communities. But I have no desire to go viral and become a large influencer. I want to stay true to my audience and provide fact-based slightly technical information about Parkinson’s disease to the Parkinson’s community and those adjacent to the Parkinson’s community.
What events do you participate in?
I participate in almost all APDA Northwest events from our Optimism Walk, and our Magic of Hope gala to our conferences for helping the Parkinson’s community.
How does this also assist the caregivers?
Information about Parkinson’s is extremely valuable to caregivers. Much of the content provided by APDA is geared towards caregivers as well.
How can someone get in touch? What is your website?
People who want to follow me on TikTok can find me at https://www.tiktok.com/@carlcs1.
To learn more about APDA they should visit https://www.apdaparkinson.org/northwest/
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
You are the same person you were before you were diagnosed.