Bret Parker, executive director of the New York City Bar Association, is preparing for a competition unlike any other: running seven marathons on seven continents in seven days.
It’s called the World Marathon Challenge. While Parker, 49, will be joined by up to 60 other participants in the race, he said he is the only participant who has Parkinson’s disease. His goal is to increase awareness about the affliction and raise money for research.
Parker, who was an associate general counsel at cosmetics and fragrance company Elizabeth Arden Inc. before moving to the City Bar in 2013, sits on the Patient Council of The Michael J. Fox Foundation for Parkinson’s Research.
“Many people don’t understand that Parkinson’s is not just a disease for older people. Many people can get Parkinson’s when they’re still trying to work and raise families,” said Parker, a father to two teenage boys who is married to Katharine Parker, a former Proskauer Rose partner who left the firm a year ago to become a federal magistrate judge in the U.S. District Court for the Southern District of New York.
Q: Where does the money from your fundraising effort go? What does it support?
A: My efforts support The Michael J. Fox Foundation, an organization focused on finding a cure for Parkinson’s disease. Parkinson’s is a chronic, degenerative neurological disorder that affects one in 100 people over 60, but people have been diagnosed as young as 18. I was diagnosed over 10 years ago at 38. Approximately one million people in the U.S., and more than five million worldwide, have Parkinson’s disease.
My fundraising is part of the grassroots community fundraising effort called Team Fox. Each year, thousands of Team Fox members raise money and awareness for the foundation through various events and athletic feats. I’ve done a triathlon, marathons, a mountain climb and even a skydive. The best part is that every penny donated for Team Fox members like me goes straight to the foundation’s research programs to help find a cure for Parkinson’s disease, as well as better treatments for symptoms of Parkinson’s disease.
Q: Why are you running the World Marathon Challenge? Is it only for fundraising?
A: For fun of course. Doesn’t everyone want to run seven marathons on seven continents in seven straight days starting in Antarctica and ending in Miami? But seriously, I’m attempting this challenge for a number of reasons beyond just raising money for research. My website contains more information about my goals. I’m trying to raise awareness about the disease, the lack of a cure and the fact that Parkinson’s is not just a condition that impacts older people. It’s also important for me to keep living life to the fullest as long as I can. Tackling a challenge like this is a reminder to me and others that I may have Parkinson’s, but for now it doesn’t have me or define me.
Q: What do your doctors think about your plans to run the race?
A: They think I’m a bit crazy to be trying this, but exercise has been demonstrated to help with Parkinson’s symptoms, so if this is what it takes to get me to work out, they are OK with it. I do have to be careful about calibrating my medications during big runs, and the symptoms of Parkinson’s make training tougher than “normal” at times. Fortunately, my doctors don’t have any health concerns that are directly tied to Parkinson’s.
Q: What have you been doing to prepare?
A: Last year I ran the New York City Marathon to make sure I could still complete one marathon. I had completed it four other times. Once I finished that, I started training again to run the Chicago Marathon, which I just completed. To increase my endurance, I’m running the Marine Corps Marathon just two weeks after the Chicago Marathon. Starting in November, the mileage and back-to-back long runs get more intense; plus I’m trying to add diet and cross-training to my regimen. The toughest training week before the World Marathon Challenge covers 71 miles, including a four-day stretch of 10-, 15-, 18- and 20-mile runs in a row.
Q: Do you have to do anything different compared with other participants during the race?
A: I take a lot of pills for my Parkinson’s during long training runs and throughout the race. Because sleep and stress make my symptoms worse, I need to take care of myself, including getting rest and massages when possible. Unfortunately, lack of sleep is also a symptom of Parkinson’s, so I’m still trying to find a solution for that. Occasionally, some of the worst symptoms are painful cramps in my feet or legs, which can stop me in my tracks and cause me to wait for the pain to subside. The symptoms can be unpredictable and there are times when you would have no idea that I have Parkinson’s, while other times I may look like I’m walking with a limp.
Q: What do you do on the Fox Foundation’s Patient Council and have you met Michael J. Fox?
A: The Patient Council is a way for the foundation to solicit input from Parkinson’s disease patients and the broader Parkinson’s community. We advise the foundation on programming for patients and caregivers and patient priorities for research. We also are involved in patient education, advocacy and outreach relevant to the foundation’s mission to find a cure. I met Michael several years ago and see him every so often, including giving him a sweaty hug on the route of the New York City Marathon last year. He’s as nice and genuine as you would think from watching him in movies and TV shows.
Q: How does Parkinson’s affect you today, physically and day-to-day?
A: The main symptoms are stiffness and rigidity in my legs and arms on my right side. I have a tremor at times in my right hand, as well as cramps in both legs and feet. Lesser-known symptoms include difficulty with fine motor skills, making my handwriting completely illegible, even to me. I sleep horribly—some nights only three hours—and I have occasional fatigue, not just from not sleeping, an extremely diminished sense of smell and sometimes I feel like my memory for certain things is not as strong as it used to be. For example, a name or word is on the tip of my tongue and I just can’t pull it out, although some of that comes with age.
Q: How do you think Parkinson’s has affected your work, first as an in-house lawyer and then as executive director of the City Bar?
A: So far, knock on wood, my Parkinson’s has not impacted my ability to work. By the end of the week, I’m fairly fatigued and I use the weekends to recharge my batteries. But facing a serious disease like this also caused me to think about my role in the world and making a difference with a greater sense of urgency and purpose, making my work at the City Bar even more rewarding.
Q: Have you gained any unique experience or perspective?
A: I think having a disease like this has made me more empathetic to the various personal issues we all grapple with and appreciative of the differences that we all have. I’m also more keenly aware of the challenges people face when trying to maintain work-life balance.
Q: Do you ever imagine a time that Parkinson’s will interfere with your work at the City Bar or generally your legal career?
A: Unless we find a cure and treatments to reverse the disease, by definition my Parkinson’s will continue to progress and eventually I won’t be able to continue working in the same kind of positions. When I was diagnosed, I worried that the deterioration would be quick and I would have to stop working quickly, but it turns out that my disease is progressing relatively slowly and staying engaged with work probably helps.
Q: When you were first diagnosed with the disease, why did you stay silent and what made you ultimately speak openly about it?
A: When I was first diagnosed, my symptoms were so minor that most people couldn’t even notice. I didn’t want to over-worry people, at work or among friends, or have my career impacted by the stigma of the disease. So I didn’t disclose my illness to most people for about five years. Then, as my symptoms started to progress and I knew people would notice and wonder, I wrote a blog for the Forbes website and told people to go read it. I decided that it was time to reveal it because the stress of the secrecy actually made me feel worse and being open about it allowed me to publicly work toward raising awareness and fundraising for a cure. Sharing the news was incredibly liberating.
Q: How would you describe the state of Parkinson’s medication and research now?
A: They are making progress, but Parkinson’s is a complicated disease of the brain and the same drugs used by patients 40 years ago are still the most common medications. There is a ton of unfunded research, as well as studies that require participants—not just Parkinson’s patients, but also “healthy” control subjects.
All interviews are condensed and edited for style, grammar and clarity.