An interview with John Reyes the Parkinson’s Runner & Team Fox on July 23, 2023 by George Ackerman, Ph.D, J.D.
I live in Houston, Texas. I was formally diagnosed with young onset Parkinson’s in February of 2019 at 37 years old. I have been symptomatic since my late 20’s/early 30’s. I enjoy running and cycling, but I’m pretty much willing to try anything to stay active. Most recently I’ve started playing pickleball. I truly believe that exercise is the best medicine when it comes to combating the progression of the disease.
Please tell me a little about your background and what got you involved with awareness.
I was diagnosed with PD in 2019 at 37 years old although I have been symptomatic since my late 20’s/early 30’s. My diagnosis story is a bit different because I never actually went to see a doctor for concerns about my symptoms. I was already seeing a neurologist for epilepsy, and I thought my symptoms like tremor, fatigue, apathy etc…. were just side effects from the epilepsy medications or from the epilepsy itself. I tell people I was accidentally diagnosed with Parkinson’s, because I was finishing up a routine appointment with my neurologist when she happened to notice my hand trembling. She asked how long my hand had been doing that? I was like doing what? Shaking? Oh, I’ve had that for a while now. One thing led to another and the next thing I know she has me going through a Parkinson’s evaluation. The rest, as they say, is history.
Can you tell me more about your advocacy?
I think what initially got me into advocacy and awareness is how little I knew about the disease I had just been diagnosed with. I figured if I didn’t know about it, and I have it… how can I expect others, especially those closest to me to know about Parkinson’s? I dove into advocacy, but I was in no condition to be a voice. I hadn’t coped with my diagnosis, and I was still trying to get my epilepsy under control with some strong medications that had terrible side effects, especially to my mental health. I remember being in this dark place and I had no tools to deal with it, so I lashed out then retreated. I stopped advocating for others and started working on myself. I got into therapy, I talked with my social worker at Houston Area Parkinson Society, I left HAPS, I left therapy, I came back, it was this whole process to deal with the mental aspect of this diagnosis that took years to get me to the good place that I’m in now. It’s an ongoing process to keep me well too.
Over time my focus has evolved towards advocating for wellness, whether it be mental or physical. I’m also focused on advocating for those that are young with this disease. I think the mental toll that knowing you have a whole life ahead of you with this disease is underestimated. The mental aspect of living with this disease is worse than the disease itself in some ways. I think it’s important to tell people that it’s okay to not be okay. It’s okay to be sad. It’s okay to cry. It’s okay to be where you are mentally on any given day. It’s just important to remember that it’s okay to stay at the sadness hotel, it’s not okay to live there. That brings me to the second thing I like advocating for and that’s how exercise not only keeps you from living at the sadness hotel, but it helps combat the progression of this disease better than any pill I’ve taken. That’s my personal experience. I notice, myself included at one point, that people say I can’t too often with this disease. It’s not easy, but yes you can. You can do anything you could do before your diagnosis with modifications and patience. I was never a runner or cyclist until I was diagnosed with Parkinson’s. While these activities can be challenging with the disease, I’m constantly modifying my approach towards them based on my progression or even how I’m feeling on a particular day. It’s important not to become this disease and to live as full of a life as possible.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My family and friends of course, but outside of the obvious I would say running and the running community has been very uplifting. It gives me a purpose that isn’t focused on Parkinson’s. I mentioned how important it is to not become this disease. Running, races, and the running community has been a great way to stay me while also being a voice within my Parkinson’s community. Locally, HAPS is a run for a reason charity partner for the Chevron Houston Marathon. I enjoy running the marathon every year as part of Team HAPS to raise funds for local programs. I enjoy running the Walt Disney World Marathon with Team Fox to raise funds for a cure. I love how Team Fox has something for everyone. I’m on a bowling team for a Team Fox event in August called Strikeout for PD. The Parkinson’s Foundation has a run challenge every year that’s fun. There are so many events to choose from if anyone wants to get involved.
What type of goals do individuals with Parkinson’s awareness have when working with you?
I don’t know about working with me personally, but whenever I’m around my local or social media community I enjoy encouraging others. I’m blessed to have a larger community here in Houston, but the YOPD community is scarce or in witness protection. I’m always available to meet or talk with others who are young with this disease. I’m a good listener.
What effect can your advocacy have on an individual with Parkinson’s awareness?
I would hope it encourages those with Parkinson’s to keep moving forward. I try my best to be real about my experiences with this disease and how it affects not only myself, but those around me. It can get messy at times. Mental health is messy. Depression is messy. Apathy is messy. Parkinson’s is messy and that’s okay. It’s important to give others grace, but it’s important to forget to give yourself grace as well.
What would you like to see as a future goal for your advocacy?
I’m really focused on resources for those with YOPD. I’d like to see programming focused on those that are still young with YOPD. I think you graduate from your newly diagnosed phase of the disease and advance; I believe programming for those that are diagnosed with YOPD should be treated the same. I’d really like to see more YOPD support groups. I think having young children is something uniquely challenging to those with the disease. I’m getting married and have 3 additional kids now. My son has only known me with PD or some kind of health challenge, so he has been easy to explain my condition too. I didn’t realize how ill prepared I was to educate my new family on my disease until I started trying to educate them. Being older comes with its own set of challenges without adding PD to the mix, being young and having a family while having PD has its own set of challenges as well. I’m basically starting all over. I think it’s important that others in some version of that situation have support.
What events do you participate in?
As many as possible. I enjoy supporting others in our community. I’m very active in supporting HAPS. I truly believe in what they do for not only our local community, but others as well. My partner and I are underwriters for the HAPS Gala in the fall, we raise funds through the Houston Marathon for HAPS as well as the Blues, Brews, and BBQ event in the spring. Team Fox is a big part of our lives as well. We’ve met inspiring people and participated in some amazing events in support of The Michael J Fox Foundation. Next up is the bowling event and I need to sign up for the Disney Marathon as well. I’ve done an Ironman with other Team Fox athletes, a bike ride… I’m always open to what’s next.
How does this also assist the caregivers?
It’s huge having a local community as well as a social media community for my partner to connect with. Having the infrastructure already in place to participate in all of the events that are out there is a big bonus. My diagnosis is yesterday’s newspaper to me, but she’s just now reading the headline. Having all these resources to help her not only understand what Parkinson’s is, but to fill in the blanks on what my version of Parkinson’s is has been a blessing.
How can someone get in touch? What is your website?
I gave away my website to a fellow Parky. I contribute from time to time to other blogs, but outside of that I’m mainly on Instagram these days sharing my shenanigans at @theparkinsonsrunner. I have a Facebook account with the same name, but I’m not as active as I am on The Gram.
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
You may not realize it at this very moment, but today you are a better version of who you were. It may not always feel like it, but the best is yet to come.