An interview with Angie Gwinn on Advocacy on July 4, 2023, by George Ackerman, Ph.D., J.D.
Biography
I am married with four grown children (two are bonus children) and two bonus grandsons whom I absolutely cherish. I have one cat I picked and two that picked me as well as a dog that was left to my husband when his brother passed. I am a special educator and have been for eighteen years. Fifteen of those years were in middle school which lets you know that I don’t scare easily.
I grew up in Florida and attended college (the first time) at Florida State University and received my first job in Miami. As my family migrated back to North Carolina, I decided to join them in 1990. I raised my children here, divorced here, remarried here, and went back to school for my teaching license and eventually went back for my master’s in reading education here.
Please tell me a little about your background and what got you involved with awareness.
I was diagnosed on January 18, 2022. This was after a year of looking into why my hand was stiff and unresponsive to my brain’s commands as well as not being able to lift objects that usually were picked up with ease.
I tried to find a support group in my area. Soon it became apparent that support groups are for non-working people with PD. I work 7am to 4pm as an elementary special educator. None of the meeting times fit my schedule.
This is when I moved to social media. I created an Instagram account called, “angie.a.gwinn_shake.rattle.rol”. This name describes my future. Right now, I shake, as the disease progresses, I will rattle, and eventually, I will be rolling in a wheelchair. Yes, a little dark humor.
The first people I followed were @littlelauraliving, @markinthepark, and @ladyduffgordon. Through watching these people advocate for themselves and others, I grew to understand that PD is not a well understood disease. Its effects are different in each person, and it does not discriminate. Through people I met on Instagram, I found out about two Facebook groups called “Twitchywoman” and “STRONGHER: Women Fighting Parkinson’s”. These two groups are full of women trying to navigate a male dominated disease. I tried to start my own Facebook group before I found these, and it was a resounding flop! Obviously, the women who started their groups know how to do it. I have found answers to questions, laughed, congratulated, and commiserated in these online support groups.
Can you tell me more about your advocacy?
The advocacy I am involved in is very small scale. I decided from the beginning of my diagnosis in January of 2022 that I would not be silent. I tell people. I am not ashamed of this diagnosis; it is what it is. I mainly use humor so as not to bring discomfort to the people I tell. For example, the other morning I did not exercise before work so my tremors were visible. I told my coworkers that if they needed any help shaking something, I was available.
I love the hashtag movement #parkinsonslookslikeme. I want to scream that phrase from the hilltops! I am only one person, but I can be loud. If you have known me for any length of time, you would know that I am very self-conscious and introverted. That is a whole other story and I probably need therapy. So, for me to start talking about PD the passion must be there. I have a passion to let others know that PD can affect anyone, and that resources and support are all around us even if you are fortunate enough to continue working.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is teaching students to read. I am a licensed reading specialist and I work with students who are two or more years behind their peers of the same age. PD is not a passion; it has become my new normal. With that being said, I do advocate and try to get involved in studies or spread the word through social media. I like the saying, “You may not be the one who affects millions, but you could be the one that impacts one that affects the million.”
The first study I became involved in was the Michael J. Fox PPMI study. I learned about it through my long-time friend, Anne, whose father died from complications of PD. I am also involved in a women’s PPMI study. Both of these are questionnaire studies that follow progression. My children are also involved in the PPMI study.
I recently signed up for a study that involves genetic testing. I should receive my kit soon. I am interested to see if I have a genetic reason for PD or if it is environmental. I raised my children in a rural area surrounded by farmland. I now know that the farmers used pesticides that have a known link to PD through ground and air spraying. I lived in a one street neighborhood of approximately thirty-five houses. Within sixteen years of my living there, one woman died of a brain tumor, one of a neurological disease, and I have PD. These are just the ones I know about. I am truly concerned for my children. I left the city to raise my children in what I thought was a cleaner environment and may have unwittingly had them exposed to neurotoxins.
It has occurred to me that my passion is stopping the indiscriminate use of pesticides that are known to cause cancers and neurological diseases. As I have started reading and noticing, chemicals that are harmful to humans are used in all areas of production, including our food supply. But how? Where do I start?
What type of goals do individuals with Parkinson’s have when working with you?
I am only one person, but my goal is to let people know that Parkinson’s looks like me. As I said before, it is an equal opportunity disease that affects people differently and is increasing in prevalence.
What would you like to see as a future goal for your programs?
I was going to try to start a PD support group in my town for women who work. Unfortunately, I have not started that process beyond talking to Lauren Simmons from PD Buzz. She gave me great insight into how to start a group. I have not followed through because, as I said before, I am an introvert and self-conscious. I need to get over that.
What events do you participate in?
I have participated in two events so far. One was in April 2021 called “Move-it” day for Parkinson’s of the Carolinas. My friend and I raised over $500 for that event.
I also participated in an adapted climbing event with Catalyst Sports in Asheville, NC. That is where I met @littlelauraliving in person! She also introduced me to other women with Parkinson’s. I talk to these women to this day for support and to encourage each other.
How does this also assist the caregivers?
The Catalyst Sports Adaptive climbing event was great for my husband. He was able to meet other husbands who understood the disease through caring for their wives. I would love to find a support group for him. He keeps a lot bottled up.
How can someone get in touch? What is your website?
The best way to contact me is through Instagram at angie.a.gwinn_shake.rattle.rol or my personal email keithangie0222@gmail.com