Sag Harbor Resident Rides for Parkinson’s Research

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Brett Parker training for the New England Parkinson's Ride.

Earlier this month, Bret Parker hopped on his bicycle in Sag Harbor and rode to Sag Main Beach, then to the Montauk Lighthouse, and back — a 67-mile training ride. It was a hot, humid day, and he felt sluggish, but he finished.

There is no quit in him. Not when he was diagnosed with Parkinson’s disease at age 38. Not when, last year, he ran seven marathons in seven continents in seven days during the World Marathon Challenge.

Brett Parker with his wife, Katharine.

And not when, next weekend at the New England Parkinson’s Ride, the Sag Harbor resident cycles 100 miles on Saturday, September 7 — and then, within 24 hours, eats seven Maine lobster rolls, an homage to last year’s feat.

“In the middle of last year’s marathon, there was one point where I really wasn’t sure I was gonna make it, and I powered through that moment and finished. After that, I realized that I’m not a big fan of quitting,” Mr. Parker said with a lighthearted laugh. “Part of the reason I do these stupid events is to show myself and others that not only am I not quitting, but I’m probably doing things that I wouldn’t have challenged myself to tackle had I not been diagnosed with Parkinson’s.”

Twelve years ago, what began as a routine doctor’s appointment to address a slight tremor in his right hand quickly accelerated to two referrals. The first sent him to a general neurologist, who diagnosed Mr. Parker with Parkinson’s disease within 10 minutes. The second, with a specialist, confirmed the initial assessment after two hours of observations and testing.

“I didn’t know anyone with Parkinson’s,” he said. “I actually didn’t know much about it at all. In fact, my first words were, ‘Am I gonna die from this?’ I didn’t know whether it was fatal or what it meant. I was 38 years old and it’s very shocking to hear that.”

Mr. Parker, who serves as the executive director of the New York City Bar Association, did not discuss his diagnosis for five years. Outside of his parents, one friend and his wife, Katharine — who will also cycle 100 miles next Saturday — no one in his life knew, including his own children.

Brett Parker takes a selfie at the beginning of the seven marathons in seven days challenge.

And then something changed, he said. He started raising money for the Michael J. Fox Foundation for Parkinson’s Research, and became a member of the Patient Council. Last year, he joined a delegation of Parkinson’s disease suffers and traveled with them to Washington, D.C., where they met with lawmakers to discuss critical federal funding for finding a cure, as well as support for those living with it.

“I went from being very secret about it to deciding that I really had to tell everybody about it, just to raise awareness,” he said. “People don’t think of someone young with Parkinson’s, and I wanted them to know this is a disease that affects people of all ages. I didn’t think I could advocate for awareness and funding for research if I wasn’t being open about it, so I decided I had to go all in.”

Last year, his participation in the World Marathon Challenge snared national press attention, chronicling the seven-day, seven-continent expedition by 15 dedicated runners, Mr. Parker said — most of whom started off as strangers and finished as family.

Leading up to the race, they trained up and down the East Coast, from Florida to Sag Harbor — “We had some people from places that are warm, so we did a weekend of long runs out here and it actually snowed that weekend, so they got a real taste of the cold,” Mr. Parker said — before meeting in Cape Town, South Africa, to board a charter plane to Antarctica in January 2018.

“Especially at the beginning, it was pretty festive and exciting. There’s something really cool about landing in a plane on an ice runway in Antarctica,” Mr. Parker said. “None of us had ever been there; I don’t think any of us will ever go back. Literally, the pilot was like, ‘The visibility is 50 miles,’ and you see nothing but ice and snow. There’s a little bit of nervous energy, so to finally get out there and run felt great.”

For the first 15 miles of the 26.2-mile course — a total of six laps around a custom-made, four-mile loop at Novolazarevskaya, a Russian research station — Mr. Parker said he felt strong. It may have been 20 degrees Fahrenheit and windy, but he was bundled up to the extreme and energized, until his symptoms began to kick in. It is impossible to outrun Parkinson’s, he said.

He crossed the finish line in just under six hours and 23 minutes, hitched a ride on a snowmobile back to shelter and, less than eight hours later, he lined up at the second marathon start line in South Africa, ready to race again.

“As we all got a little bit more tired and beat up, people had more medical problems,” he said. “We had people getting IVs on the plane, me getting my blisters wrapped and treated on the plane. One person got a fever and had to quit. They say misery loves company, and we really all felt like we were in it together. This was not a competitive event. Everybody was cheering everybody on to finish.”

Run, shower, fly — eating, sleeping and recovering aboard — and repeat: this was the schedule for the next five grueling days. After the second marathon in Cape Town, the athletes raced in Perth, Australia; Dubai, United Arab Emirates; and Lisbon, Portugal.

“Lisbon was a terrible moment,” Mr. Parker said. “I had terrible blisters on my feet. My symptoms were bad. I was completely jetlagged and, that marathon, it rained, it was cold, it was nighttime. That was my slowest marathon — I was nine hours and 15 minutes — and I basically finished in the morning while the rest of the runners were already having a quick breakfast in the hotel lobby. I pulled in and I had time to take a quick shower, change into dry clothes and get on the plane.

“That marathon, that was the worst one,” he continued. “It was both the worst one and the turning point, because that’s when I realized if I could finish that one, there was really no way I was gonna stop.”

The sixth marathon in Cartagena, Colombia was “bad, but not as bad,” recalled Mr. Parker, who was greeted by his loved ones at the starting line of his final course in Miami, Florida.

“I started off really strong and feeling great, just because of the adrenaline of seeing friends and family and knowing we were in the home stretch, but I still ran for over 8 hours,” he said. “After the first two or three marathons, I was the last one to finish every one — and sometimes by a pretty big stretch. But finishing in Miami felt great.”

This year, Mr. Parker will be one of over 1,000 cyclists during the 12thannual New England Parkinson’s Ride, which allows riders to complete one of four distances: 10, 30, 50, or 100 miles. To date, he has raised $50,799 of his $60,000 goal for The Michael J. Fox Foundation for Parkinson’s Research.

“Last year has maybe helped me redefine ‘sanity,’” he said. “Most people don’t sign up for the 100. I could have signed up for the shorter distance, but I felt like in order to keep the spirit of ‘Do Epic Shit’ — which is my slogan — the shorter distances, to me, didn’t feel as epic. For some people, the shorter distances are exhausting and almost impossible and very epic, but for me, I felt like 100 miles was my epic.”

After the ride, the lifelong lobster lover will attempt to break his five-rolls-in-24-hours record, stopping at different seafood restaurants along his drive from Maine back to the East End.

“I felt like seven was, first of all, a stretch goal from my previous record of five, and I also feel like seven ties into the seven continents and the seven marathons,” he said. “For me, it’s very poetic to try to tackle seven lobster rolls.”

All joking aside, Mr. Parker does worry about what his future holds while living with Parkinson’s disease — a neurodegenerative disorder that causes stiffness and slowing of movement, and eventually impacts walking and talking. Every day, his symptoms get a little bit worse, he said, and the difficulties to come are never lost on him.

“Part of what drives me to do all of this now is to do all of it while I know I can,” he said, “and ‘epic’ for me will change over time. There will come a time when doing a 5K race will be epic. And I hope I’m mentally strong enough to still tackle that when that becomes tough to do. I do realize that not everything has to be as shocking as seven continents. It’s one event at a time, so I’m just gonna get through this one and try to finish it.”

 

To donate to Bret Parker’s New England Parkinson’s Ride, visit fundraise.michaeljfox.org/new-england-parkinsons-ride/777.

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