Chris Woods was 41 years old when he was diagnosed with PD. His sister, Cindy Woods Theberge, tells me Chris was one of the people who felt a call to action when Hurricane Katrina struck New Orleans in 2005. He left his business and his family, and wound up living in a tent city, where as a volunteer with the Red Cross, he tried to help people find housing, fill out paperwork, and do the things they needed to do to get going. “At the time he was standing around for 14 hours a day on cement or in mud, and his sneakers were always wet.”
Chris, whom I talked with later, notes “I can pinpoint the very first symptom. I remember the ball of my right foot cramping and my right arm not swinging when I walked. I thought it was from just being on concrete all the time, living in tents. I was down there almost a month. That would have been late October ’05. After I came home, I noticed some other things. My right hand wasn’t moving as much as my left when I washed my hair, for example.” Cindy did not know at first, because Chris told no one, not his sister, his mother, or even his wife. But, he knew something was wrong, and in January 2006, started looking to doctors for an answer.
Early PD can sometimes be difficult to diagnose, and Cindy tells me that now she knows “at first they thought it was a stroke, or maybe a brain tumor. He was checked for Lou Gehrig’s and MS. Then, they called it dystonia.” In June 2006, Chris met Dr. Marie Saint-Hilaire, a movement disorders neurologist at Boston University. “She made the diagnosis in 20 minutes.”
Only then did he let family know there was a problem. Cindy recalls, “He called me and said, ‘Are you sitting down? They said I have Parkinson’s.’ We didn’t know anything about it back then, nothing.” They found out as much as they could, and being the fighters they are, the Woods family pulled together to help Chris, and ultimately, to find a cure.
At the time, Chris had been riding in fundraisers for diabetes and multiple sclerosis, diseases which touched other family members. They wanted to participate in a cycling fundraiser for PD. “We looked around and couldn’t find anything. I contacted both directors from the MS and diabetes rides and they told me ‘don’t even think about starting a ride, there is no way in this economy.’ There was a guy doing a bike ride from Boston to Maine, and we got together and joined him. That first year there were 37 cyclists. It went one way from Boston to Old Orchard Beach, and there was no way to get back. A family member would have to come get you. Still, we did it again the second year, and we had about 85 riders. The next year the ride didn’t happen. We ended up starting all over in 2008, and instead of a one-way we made it a loop around Old Orchard Beach, so riders can get back to their own car or whatever they want.” That was how the New England Parkinson’s Ride began.
The family all wanted to be a part of this. “Here’s the problem, the rest of us don’t ride,” Cindy said. To this, Chris replied, “well, find a bike.” At the time, they were based in New Hampshire, but according to Cindy, “we already loved Old Orchard Beach, and it is much more bike friendly.” So they began the process. The first year, 2008, their mother Edna, who was 73, went door-to-door asking Mainers if it would be okay to put in a rest stop at their home, and “no one could say ‘no,’ how could you?”
From the beginning, the ride was linked to the Michael J. Fox Foundation. Thirty-five riders in 2008 raised over $27,000. Cindy notes they have grown by about 30% each year, and in 2015, 800 riders raised $546,000, the biggest single-day fundraising event for the MJFF to date. Since starting the ride, the group reports over $1,750,000 in cumulative donations to MJFF.
Per the New England Parkinson’s Ride website, “all routes begin and end at The Ballpark in Old Orchard Beach, Maine and travel through the countryside and shoreline.” Riders can choose to cover distances of 10, 30, 50, or 100 miles and each section starts at a different time, longer distance riders starting at 7:30am, and the shortest distance riders at noon.
Cindy stresses, it is hard work to ride that far, but it is a really fun event.
“Everybody has a great time. And, last year we had 42 riders with Parkinson’s.” Chris is still riding. “I will do the 100 mile ride as long as I possibly can.”
Randall Curtis, a 59 year-old resident of Belfast, Maine has PD, and has ridden for each of the last five years. Last year his group of friends and family totaled 11 riders. He notes, “they stagger the starts so everybody gets done at roughly the same time for food and music. It’s a fun, fun, day.” Randall did the 30 mile ride last year and tells me it is also about fighting PD. “I just think that people need to move it or lose it. You have to exercise, and I can tell it helps me.”
There is a dinner on the Friday night prior to the race, but space is limited, and early registration is key for that. Based on projections, they think they will hit 1,000 riders this year. There is a lot that goes into preparing for this, and typically about 300 people sign up during the last two weeks before the deadline – not much notice for the organizers.
There is also the issue of taking enough time for riders to raise funds. Riders are committed to raise (or contribute) at least $100 each to the Michael J. Fox Foundation. The registration fee of $45 covers the cost of food, rest stops, a modest meal after the ride, T-shirt, porta-potties, and even a band after the ride. There is more overhead involved in running an organization like this, and that is why they have become a 501(c) (3). Aside from Cindy, who gave up her career to become the full time director, the staff is all-volunteer. Some funding comes from sponsors.
The New England Parkinson’s Ride will be Saturday, September 10, 2016, starting at The Ball Park, 7 Ball Park Way, Old Orchard Beach, Maine. The schedule is:
100-Mile – 7:30am
50-Mile – 9:00am
30-Mile – 10:30am
10-Mile – 12:00pm
To register or learn a little more, go to http://neparkinsonsride.com/
