A Superhero, Raising Awareness

BY ANGELA BARBUTI

“I had always dreamed of running the New York City Marathon ... I saw them wear those metal blankets and to me, they looked like superheroes,” said Bret Parker, a Manhattan native. He ran for the first time in 1996 with his childhood best friend and calls himself a “serial runner,” having participated on and off since then.

When he was 38, he was diagnosed with Parkinson’s. “It’s not just a disease for old people. People get it in their 20s, 30s and 40s. ... And so, it’s more relevant to people than they realize and hopefully that should give them a sense of urgency to help find a cure.”

This year, he is running the Nov. 6 marathon for the Michael J. Fox Foundation for Parkinson’s Research to try and help find that cure. Headquartered in Midtown, the organization was a resource for Parker when he was first diagnosed and had questions about the disease. A few years later, he became active with Team Fox, which is the organization’s community fundraising program. Because of his involvement, he was asked to become a member of their patient council, which consists of patients from across the country in different phases of the disease, who share their experiences to assist with the foundation’s research.

A graduate of Fordham Law, Parker serves as executive director of the New York City Bar Association. The voluntary association, made up of about 24,000 lawyers and law students, is a resource for lawyers not only in the city, but around the world.

I read your piece in Forbes, which was the first time you spoke of your diagnosis publicly. What made you want to do it in that way?After a few years, I had started to tell a couple of close friends and family. And every time I told someone my story, it was very upsetting to me and them. It was very emotional to go through it. And I decided that it was just easier to rip the bandage off all at once and tell everybody at one time. So I wrote the blog and just sent people an email that said, “Go read this.” I also figured it would be a good way to do a fundraiser, so at the same time that I told everybody, David Samson, my childhood best friend, did this double marathon and I ran one leg of it with him. And we raised money for the Michael J. Fox Foundation. That was the first time I had done a fundraiser.

What kinds of symptoms made you get checked out?All I had at that time was a very slight tremor in my right hand when I would pour like a big bottle of soda, which a lot of people have. And for a lot of people it’s very normal, but I figured I’d better get it checked out. I actually thought it was carpal tunnel syndrome. [Laughs] I went to my doctor, and he was concerned enough to send me to a neurologist. And the neurologist, after literally a 7-minute appointment, said, “Oh, you have Parkinson’s.” There’s no blood test; there’s no chemical test. They basically do it through a series of observations. And then I went to a specialist who took an hour and a half and she had the same answer. But I felt better because it was a longer appointment. [Laughs]

Explain how you first got involved with the Michael J. Fox Foundation.When I first got diagnosed, the first thing I did was go to their website just for information. At 38 years old, you don’t think of Parkinson’s. I didn’t really know anything about it. The first thing I asked the doctor is, “Am I going to die from this?” I didn’t even know whether it was terminal. So I go to the Michael J. Fox website and it was great and had all this information for patients and things about symptoms. And then I noticed they had a fundraising effort called Team Fox, which is for individuals who do runs or pancake breakfasts, pretty much anything. Since I’m not a doctor or researcher, I can’t find the cure myself, so figured I could help raise money for people who would find the cure.

You’re a member of the foundation’s patient council. What does that entail?After I got involved with the foundation for a couple of years, they asked me to join the patient council. It’s a group of about 15 or 20 patients from all across the country, all different ages and phases of the disease and with all different kinds of symptoms. And we get together a couple of times a year with the foundation and they talk to us about research they’re working on and we talk to them about what we’re experiencing. And they use us sometimes as a focus group and to get feedback on website changes or clinical trial programs or things that they’re working on. So it’s a dialogue where we get to meet with them a couple of times a year.

Did you ever meet Michael?I did. I was fortunate enough to meet Michael a couple of times. He’s just a fantastic person. You know him from his shows and movies, and he’s just as nice as you think he would be.

How do your doctors advise you in regards to training for and running the marathon? As the people at the Fox Foundation say, when people ask, “If I have Parkinson’s, should I exercise,” the answer is, “If you have Parkinson’s, you should exercise. If you don’t have Parkinson’s, you should exercise.” The research does show that exercise helps. It keeps you strong; it keeps you flexible. It’s really important. My doctor’s view is any exercise that I’m comfortable doing, I should feel free to do. Now, marathoning is a little extreme; it’s tough on your body. But I know myself and if I don’t have a goal as ambitious as a marathon, I won’t run. And that’s what happened all those years in between my marathon. If I didn’t have a goal, I wouldn’t exercise.

How is it different running with Parkinson’s?First of all, it’s harder to run. My right side is stiff. My leg gets stiff. My arm gets stiff. I get a tremor in my hand. So I have to take more medicine when I’m running to try to help offset some of the symptoms. In the course of the marathon, I’ll probably take as much medication as I would usually take in a full day. I usually take medicine every few hours. When I’m running, I feel like it’s using it up more quickly, so I’ll take it every hour or two just to keep myself from getting cramps and stiffness and tremors and all that.

What is the New York City Bar Association and what does your job as executive director entail?It’s a voluntary association of approximately 24,000 lawyers and law students. It’s an opportunity for people to come together to get education, write committee reports, network, socialize and advocate for changes in the law. We don’t handle the bar exam or bar admission; we don’t discipline lawyers. We’re a resource for lawyers, not just around the city, but around the state, country and world. Our headquarters is on 44th between 5th and 6th, where all those clubs are, so it’s right next to the Penn Club, the Princeton Club, right between Grand Central and Times Square. We hold hundreds of events there every year; we write hundreds of reports every year.

To donate to Bret’s run for a cure, www2.michaeljfox.org/goto/bretrun

To learn about the foundation, visit www.michaeljfox.org