By Erika Alison Cohen
When Dick Merk started participating in the New England Parkinson’s Ride in 2018, he asked donors for the names of people they knew who had Parkinson’s or who had died of Parkinson’s, and he wrote them on his numbered bib. By 2023, the list had grown to over 100 names printed on a placard he wears pinned to the back of his shirt. Dick, who was diagnosed 14 years ago, wants people to know they are not alone and that his team, Merk PD Riders, is doing all they can to fund research to find better treatments and ultimately, a cure. Last year, Merk PD Riders had 20 members and has raised over $154,000 since starting in 2018. His team now includes friends, family, past donors and people who knew other team members and joined.
Why does he ride? First, because he can, and second because he believes with all his heart that “no one should ever have to hear the words, ‘You have Parkinson’s Disease.’” Dick is public about his diagnosis now, but it wasn’t always that way. Initially devastated and overwhelmed, he kept his diagnosis private for seven years. “When you get a diagnosis like this, two words — incurable and progressive — are commonly used. I first looked at Parkinson’s at age 55 as ‘this is your death sentence.’ That was more a product of knowing almost nothing about Parkinson’s Disease.”
In addition to managing his Parkinson’s with traditional medication, Dick has increased his aerobic fitness through exercise beyond cycling. After attending a support group meeting early in his disease where he learned that exercise keeps symptoms at bay, Dick added weight training, pickleball, hiking and yoga. He also joined Rock Steady Boxing of Central Massachusetts, a non-contact boxing group specifically for people with Parkinson’s. The program provides boxing training with a focus on things that people with Parkinson’s worry about — balance, endurance, agility, speech, posture, timing, dexterity and multitasking. The program not only keeps him active, but it’s also a dynamic support group with new members coming each month. Dick often stays after his own class and helps coach two other classes. “You meet a lot of people along the way after six or seven years who are also searching for ways to take some control of their disease. Once they see the benefits of exercise, their outlook toward living well with Parkinson’s begins to change in a positive way. Unfortunately, over time some boxers who I had gotten close to passed away. This is a hard thing to accept and it makes me more committed to help others and raise money through the New England Parkinson’s Ride to find a cure,” Dick said.
The first year he rode to raise funds, his team had four riders: himself, his wife Janice, a friend from Rock Steady Boxing and a close friend from college, who when asked to donate, instead told Dick he was coming to ride and has returned each year. They raised $15,000 in 2018. Every year since then the amount increased, and last year, his team raised $43,000. “Each year I am amazed at the love and generosity of our donors who continue to support the effort whenever I ask, and for our riders who make it such an enjoyable event. I realize that research takes money and if that is what’s holding us up, it’s a shame. We really have to continue to do more and others want to get involved,” he said. Dick’s team has also become advocates for the ride, bringing in new people each year. For example, one of his riders was wearing his NEPR shirt while riding in suburban Philadelphia. A man riding by saw the shirt and stopped his friend to learn more about the ride because his wife has Parkinson’s, and as it turned out, that they were going to be in Maine in September. The man joined Merk PD Riders and rode 50 miles.
Every year, Dick rides with the 30-mile group. He likes riding hard to the first rest stop to greet his team members, and then he hangs back as a sweeper to make sure everyone is safe and finishes with other team members. Just like the battle against Parkinson’s, no one rides alone. He says the ride has gotten easier for him because he is familiar with it, and he rides more often than six years ago. As he says, “the body follows the mind.” But life with Parkinson’s is not easy, even for Dick, who has been able to keep Parkinson’s at arm’s length and remains extremely independent. “Parkinson’s never takes a day off and slowly takes from so many different areas of your life. It is an exhausting disease and some days it is so hard to get up and do it all again,” he said. The effects of the disease have crept more and more into his daily life such as forgetting tasks, trouble maintaining focus, more difficulty controlling hand and leg tremors, and lately, his speech patterns have started to suffer. “Sometimes I feel like I live my life each day in six four-hour segments,” he said, explaining it corresponds to the number of times he takes Parkinson’s medications. He used to struggle with sleep, but that has improved, and if he gets a total of five to six hours, that is a good night.
Just as Dick’s outlook on life has changed, so has his entire attitude about Parkinson’s. “I forget what it’s like to not have Parkinson’s. The hardest thing for me is it is on my mind all the time,” he said. “It keeps progressing. We haven’t officially found a way to keep it on hold, but I am doing everything I can to slow down the progression by staying physically fit. I am coming up on 15 years and I am still rocking and rolling. And the New England Parkinson’s Ride gives me another chance to help others with the disease while we work to find the cure.”
Check out Dick Merk’s 2024 Fundraising Page – HERE.
By Erika Alison Cohen
Erika Alison Cohen is a long-time ride participant who lost a close family member to Parkinson’s Disease. She works as a ghostwriter and book editor, with a specialty in financial writing and business memoirs. Besides cycling, she is an avid runner and co-wrote Stories from the Starting Line, a book about running in New Hampshire that came out in 2023. You can learn more about her at eacohen.com.
