An interview with Greg O’Keefe on Advocacy on August 30, 2023 by George Ackerman, Ph.D, J.D.
My name is Greg O’Keefe, and I have Parkinson’s Disease. I was born in Green Bay, WI, and I grew up in Tennessee. I joined the USN while in college, and after college became a nuclear propulsion officer. After about six years in the Navy, I resigned and started a career in IT. I have been a programmer/developer/software engineer for over 25 years, doing mostly C coding and shell scripting with AIX and Informix.
Please tell me a little about your background.
I used to run a lot, and in August 2013 I started experiencing symptoms while running that at the time I did not understand, but that I would later learn were the beginning of my PD journey. At the time, not knowing what was causing my symptoms, I decided to stop running–and since then I have come to regret that decision very much. Fast forward to April 2016, I finally went to see a neurologist, went through a variety of tests, and found out that I had Parkinson’s. Online research showed that exercise was important, so I started walking daily and doing tai chi twice a week. One year later my neurologist recommended Rock Steady Boxing, and I started attending RSB Green Valley at the Tony Cress Training Center in Las Vegas.
Can you tell me more about your Advocacy?
Around the same time, Parkinsons Place Las Vegas was getting off the ground. At their first annual movement fair in early 2018 I learned that, in order to be effective in slowing the progression of the disease, exercise must be vigorous. At that point I decided to stop tai chi and step up my gym activity. I enjoyed the workouts at the gym, so I went from attending once a week, to twice, and eventually four times per week. As time went on and I became stronger I was invited to participate in a Spartan Sprint with some other folks from the gym. We drove down to Phoenix for the Arizona Sprint in 2019, and I loved it. I learned about the Spartan “trifecta”–completing a Sprint, a Super, and a Beast in a calendar year–and decided to try to earn one. I did complete my first trifecta in 2019, combining the Arizona Sprint, the Las Vegas Super, and the Seattle Beast. I quickly learned that I was not prepared for the Super, let alone the Beast, and so I continued training, the idea being that I should complete a trifecta every year.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I planned my three races in 2020, but they ended up being cancelled due to COVID-19. No trifecta for 2020. I was able to transfer those races to 2021, but I ran only the Dallas Sprint and Las Vegas Super. The San Luis Obispo Beast was postponed to November 2021, and then it was postponed again to the April 2022. That meant no trifecta for 2021 either, but I decided to finish what I started. I completed that 2021 Beast in the Spring of 2022, and then I did a second Beast at Snow Basin in Utah, plus a Super in Monterrey. I was planning to run the Dallas Sprint in October, but my plans changed. I broke my leg in September immediately after completing the Blue Ridge Relay with Team Synapse, a history-making all-Parkinson’s team of runners. Even though I spent a good deal of September and October using a walker during my recovery and rehab, I did not want to lose another year’s trifecta. I switched from the Dallas Sprint in October to the Arizona Sprint in November 2022. I was not in running shape yet by race day in November, but I limped along on my cane as best I could. I walked the whole thing and skipped nearly every obstacle . . . but I finished.
What would you like to see as a future goal for your advocacy?
I had started physical therapy the day after surgery on my leg, and after continuing through the end of the year, I was able to focus on running once again. I ran the previous Rock’n’Roll Las Vegas half marathon in February 2022, and immediately afterwards signed up for this year’s 5k and half marathon. As race weekend drew nearer I did not know what to expect. Would I be able to run all of the 5k? Maybe just part of it? I was pleasantly surprised by my performance in the 5k. I intentionally started slow, expecting to have to walk to manage the pain, but somehow I was able to run the whole thing, and at an increasing pace. Not so the next day in the half. That was more like what I expected, running the first few miles and walking the rest. There was definitely some pain in my leg due to the partially-healed break, but the pain due to fatigue and out-of-shape muscles in my legs and glutes was worse. A few weeks later in March was the Las Vegas Spartan weekend, which–like the races in February–I had committed to before I broke my leg. I ran the Super on Saturday and the Sprint on Sunday and did reasonably well. With no immediate Spartan race upcoming, I joined a team of runners for the Zion Ragnar in May, and shortly after that I completed the Sawmill half marathon. You might think that with so much running I would be pretty good at it, but I’m really not, lol. I’m quite slow, and after running without mishap all these years, I have had three falls in 2023. There was one minor fall each in the Ragnar and Sawmill, and a more serious fall on a training run in June. Since then I have begun to rethink my trail-running hobby. I still want to train as hard as I can, but more than that I want to avoid further injuries.
What events do you participate in?
Mostly events for Team Fox. I first got involved with Team Fox when I raised funds via a sponsored Mt Whitney expedition. The BRR was likewise a fundraiser for the MJFF.
The primary setting in which I work with other (Person with Parkinson’s) is when I volunteer at RSB. I try to be a good coach, watching and teaching what I can when I see an opportunity to help someone improve.
How can others also become advocates for awareness?
There are many ways to get involved. Anyone can
–volunteer at a local Rock Steady Boxing
–participate in a fundraiser for MJFF or another similar organization
–sponsor a PwP at RSB
–be a driver and help someone with advanced Parkinsons get to the gym
–set up a new fundraiser, such as a run, bike ride, golf tournament, etc
–share posts on social media from Team Fox, etc. to increase awareness
How can someone get in touch? What is your website?
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I believe that laughter is good medicine, so while I try to focus on my workouts and do my best, I also like to joke around, sometimes making light of my own situation. For example, “I do more with 30% agility and 50% balance than most healthy people do with 100% of each”. Or when the coach at the gym tells the class “you should be working hard enough to be shaking about now” or “try not to straighten your arms on these push ups”, I smile and say “no problem” 🙂