An interview with Stephen Williams on Advocacy, TikTok & T-Shirts on July 21, 2023 by George Ackerman, Ph.D, J.D.
Biography
My family history and Parkinson’s, to the best of my knowledge, have crossed paths twice. Primarily on my father’s side, a great-uncle and my grandmother were both afflicted with PD. My wife’s grandmother fought with the progression for decades. Suffice it to say, I’m familiar with the disease. I wish this was the whole reason for my involvement with the promotion of Parkinson’s awareness. It wasn’t until I was diagnosed with PD in 2019.
This moment in my life reminds me of the character Atticus Finch in the novel “To Kill A Mockingbird”. He’s speaking with his little daughter, Scout, seizing the moment to give a life lesson in empathy.
“You never really understand a person until you consider things from his point of view—until you climb into his skin and walk around in it.”
Please tell me a little about your background.
I was very much an artist when growing up. I even attended an art college. I flunked out within the first year. I had zero drive!
Fast forward to May of 1994. Due to a rogue shopping cart, on a hill, I met my wife and married her in December of that same year. We were BOTH 24 and tired of playing the dating game.
In 2006, with 3 mouths to feed, my family was under financial distress, lost our first home, extreme measures to stave off creditors fell on my shoulders. I went to a local truck driving academy and one month later ‘BOOM’ I’m a proud owner of a Class A CDL.
Thus, my career as a Professional Driver has begun. I drove with two different trucking companies before, FINALLY, in 2007 I got the job that I would work for and happily retire. It was a dedicated route, which covered seven states, for a welding gas company. I would drive for long hours and work between 9 to 13 hours a day BUT be home every weekend. The hours didn’t really concern me all that much. I was strong healthy 37 yr. old man and the pay was CRAZY GOOD.
Can you tell me more about ParkNsons T-shirts?
With encouragement from my primary Dr and Neurologist the exercise of drawing can slow the progression of PD. Both sharpen my fine motor skills and cognitively decline. Let’s not forget the dopamine that is released from enjoying the creating of art.
With PD primarily affecting the right half, which I happen to be right-handed, it became a lesson in patience. My tremors were so bad. At times I seriously thought I was going to break the mouse.
An art project that would take me a couple of hours started to take 3 – 4x that time.
I was encouraged to show other people my work. I decided to use a platform to encourage others with the same condition. So, I started Parkinson’s t-shirts on a POD (Print on Demand) platforms like Teepublic and Redbubble.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My “passion” is a bit complex because it’s focused on two fronts. My first passion is to take my God-given gift of art and bring Him glory. The other front is to be available to people who are recently diagnosed with PD and share my experience so far.
“My Involvement” with Parkinson’s Awareness in this manner was mostly accidental. Originally, art was a suggestion by my neurologist to help with neuroplasticity. Keep sharpening my hand-eye coordination. Exercising memory retention and creativity.
As far as a cure, I don’t know enough about the possibility of one. Personally, if there is a cure out there, I have no hope for a cure in my lifetime. It would be nice to just pop a pill and BAM! Parkinson’s is gone.
However, A cure for my children or grandchildren would be more important than my own. At this point, there’s no indication they will have PD. What concerns me is their connection with my family line. So, a cure that’s available for them is essentially my hope. But the time I have here is to be an advocate and an example of a life with Parkinson’s.
Fast Forward
Fast forward AGAIN, to 2016. The thought that was predominantly in my mind, Am I coming down sick or just overworked? I felt constantly tired and moody. I was perhaps borderline paranoid at times. It was starting to frighten me. By 2017 my thumb, of my right hand, started to develop a tremor. Thinking the cause was l may have injured my shoulder. The shoulder was consistently stiff and had lingering pain and had been giving trouble for months. It was easy to connect the dots. My job had me moving heavy cylinders. End of story!
Adding more stress, I’d frequently wake up in a hotel, panicking. Even more disturbing, I’d drive and forget where I was going. Sometimes I wouldn’t notice my error for 3 or 4 hours.
I went from my primary physician, to being recommended to a neurologist. This was the beginning of a year-long rollercoaster ride of emotions. I’ve heard this story so often from other people with the diagnosis of Parkinson’s disease.
I was initially diagnosed with essential tremors, then Parkinson’s disease, then Lewy Body Dementia and finally back to Parkinson’s disease in August 2019,
I remember the phone call. The voice of my neurologist on the other side. Mr. Williams, I’m sorry but this is the end of your professional driving career. He went on to tell me, the medication to treat PD will compromise your ability to drive commercially. I was in so much shock. I didn’t believe him. My mind played mental gymnastics, trying to explain it away.
What effect can your advocacy have on an individual with Parkinson’s awareness?
A sense of community That they’re not alone in this. A voice in this disease and to be heard.
What would you like to see as a future goal for your advocacy?
My goal is to make 1000 designs before PD takes it away. I currently stand on Teepublic platform 362 designs. This is NOT easy.
These designs are here to bring a smile to the faces of people who suffer from PD.
The act of smiling or laughter is excellent medicine for, not just mental health, but giving a positive outward look on life.
What type of goals do individuals with Parkinson’s awareness have when working with you?
To be truly honest, this is a difficult question to answer. Better professional help for the newly diagnosed. Essentially, to walk side by side with both medical, financial, and legal help, I was left terrified and alone when I was diagnosed.
I’ve worked with numerous people from all walks of life. Not just people with PD. One example is Austin Crawford with the MSA Foundation, for which I provided designs for t-shirts and an independent film Movie poster, “Driven To Help” (The Austin Crawford Story Sequel).
I’ve also helped with campaign art for Matt Vilardebo, 2022 candidate for South Carolina district representative.
People who I know and who also have a close association with PD find the angle of my designs refreshing and effective in bringing awareness. We all have common goals. The stigma of Parkinson’s is that it is an elderly disease. That it’s a death sentence. Life will change dramatically, for sure, but it’s not over.
What events do you participate in?
I have hopes that my designs will sell to the point where I can eventually contribute to a foundation.
How can someone get in touch? What is your website?
Look up “ParkNsons Tshirts” on social media on Facebook, Instagram, and Tiktok. Or parknsonstshirts@yahoo.com
Teepublic http://tee.pub/lic/ParkNsonsTshirts
Redbubble https://www.redbubble.com/people/Steve50W/shop?asc=u&ref=account-nav-dropdown
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“Let us live so that when we come to die even the undertaker will be sorry.”
~ Mark Twain