An interview with Joe Drake on Advocacy on September 21, 2023 by George Ackerman, Ph.D, J.D.
Joe Drake is a retired engineer living in Seattle, Washington. He grew up on Long Island, New York in a large family; he was the seventh of twelve children. He met his wife, Lynn, in 1985 when they both took jobs with Hewlett-Packard in California. They raised their children, Kinsey (27) and Aidan (25) in Palo Alto before retiring to Seattle in 2018.
Joe had always been active in sports including soccer, running, bicycling, hiking, swimming, and triathlons. As his children grew, he coached their soccer and Little League teams and managed their local swim team. Aidan, Kinsey, Lynn, and he are all capable cooks, and they love to share meals and recipes.
Joe was diagnosed with Parkinson’s disease (PD) in 2018 at age 57. His diagnosing neurologist told him that the best therapy for PD is vigorous exercise, which, given his background in sports, was an enormous relief. He took that message to heart and in 2019, he ran his first marathon. As of August 2023, he has run a total of 19 marathons and plans to run three more before the end of the year.
He has found that running has indeed been a powerful therapy. As a result of it and the medicines he takes, he confirms that the progression of the disease has slowed and perhaps stopped such that he no longer experiences significant symptoms.
Joe has a special interest in the World Marathon Majors (WMM). The WMM are some of the preeminent marathons in the world that take place annually in Tokyo, Boston, London, Berlin, Chicago, and New York City. Normally these events are scheduled from March to November but the pandemic caused a one-time disruption in 2021 such that all of them were scheduled during a six week stretch in the fall. Joe ran all of them on that compressed schedule. Only one other runner in the world (elite marathoner, Shalane Flanagan) accomplished this feat.
Joe’s award-winning book – Run With It: A True Story of Parkinson’s, Marathons, the Pandemic, and Love – describes his journey starting with his diagnosis and continuing through his transformation to marathoning and conquering the 2021 WMM on the crazy short schedule. Besides the events themselves, he presents a primer on PD and describes the attitude adjustments he made to better cope with, and thrive, in his new reality as a person living with it. All profits on the sale of the book are donated to Parkinson’s research.
Please tell me a little about your background.
I am from a large family and three of us, as well as both our parents, have been diagnosed with Parkinson’s disease and I fear that, given that I am in the middle of the pack, there may be more such diagnoses in the future. I and all my siblings have recently agreed to participate in a study aimed at diving deeply into our collective genome. Perhaps we can help shed some light on this pernicious disease.
My siblings’ diagnoses spurred me to seek out a neurologist to discuss some symptoms I was having. I think this helped me to catch the disease earlier than I would otherwise.
Can you tell me more about your organization Parkinson’s advocacy?
I am one of the lucky ones because I caught the disease early and have developed a therapy that works exceedingly well for me. Through various means – my book, my blog, media interviews, word of mouth, etc. – people recently diagnosed with PD seek me out for advice and perspective, which I freely give to them.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to raise awareness of how powerful exercise can be in fighting the effects of Parkinson’s. I first got involved with Parkinson’s awareness in 2021 when I decided to run in all the World Marathon Majors. One way to gain entry to the races is by working through a charity. Runners can enter the race in exchange for raising donations for that organization. I turned to Team Fox of the Michael J. Fox Foundation for entries into London, Boston, and New York City in 2021 and since then have continued to enter events and raise money for them. To date I have raised more than $50,000 for Team Fox.
What type of goals do individuals with Parkinson’s have when working with you?
Many people upon being diagnosed with PD are scared and, understandably, anxious about what the future holds for them. I can address their fears and help them face the future with positivity. This is an important point that is often overlooked by their medical care teams. PD is all about a deficit of dopamine, the neurotransmitter that is involved in many of the body’s motor functions. But dopamine plays a part in the brain’s reward system and as a result people with PD often suffer from depression. I point this out to them to let them know that when they feel depressed or unmotivated it is not really them but rather the disease that is making them feel this way. One can choose positivity as a mindset and in doing so take an important step towards thriving despite having PD.
Generally, I will cover a lot of ground in a single one-on-one phone call and we follow-up with each other from time to time. I like to know how these folks are getting on with their journeys. I am happy to do this for them. It is a positive therapy for me as well.
What effect can it have on an individual with Parkinson’s?
I have been told that I bring light to an otherwise dark time. My wife firmly believes that I have saved lives, especially for those who were deeply depressed upon receiving their diagnosis. One gentleman considers me a member of his care team (though I don’t hold any status as a medical practitioner.) I think it is important for people to have the opportunity to speak with someone who has the disease and can share a relevant perspective. And if I manage to motivate the individual towards exercise then they will very likely see a slowing of the disease’s progression in them.
How does this also assist the caregivers?
Often, the caregivers contact me, and I give them similar advice. They, too, face an uncertain future and I can help allay their fears.
What would you like to see as a future goal for your advocacy?
I like these one-on-one sessions with people who are just starting their Parkinson’s journey and will continue in this manner. However, I have also presented to groups thus raising awareness of the disease and I hope to do more of that.
What events do you participate in?
I have participated in Team Fox endurance events, specifically as a runner in the Boston, London, Chicago, and New York City Marathons. I also am a charter member of Team Synapse organized by Bill Bucklew of Uncorked Adventures, an advocacy for Parkinson’s disease research. Team Synapse has entered teams of runners who all have PD to compete in various long-distance relays. Recently I have become involved with the Northwest Chapter of the American Parkinson’s Disease Association (APDA).
How can someone get in touch? What is your website?
I can be contacted through my website, joesgottarun.com or by email at email@example.com. For those interested in what I am up to in the worlds of running and Parkinson’s, I occasionally post to my blog, joesgottarun.medium.com.
How can others also become advocates for awareness?
It need not be fancy. If you have PD or are the caregiver for someone who does, then share your experience with others who may be struggling with it. You can bring light to their lives.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Be audacious. Accomplishing the extraordinary is wonderfully therapeutic.