Fighting back against Parkinson's with Rock Steady Boxing

Terry LeGrand was 60 years old when he was diagnosed with Parkinson’s Disease. Even with a few years of medication, he struggled with everyday tasks. “I couldn’t tie my shoes, I couldn’t put on a belt, I couldn’t turn over in bed, my handwriting went to hell, I couldn’t get out of bed, and I only shuffled to walk,” he says.

Today, after a year of (literally) throwing punches at his disease, LeGrand is able to do those things again at 65. “Rock Steady Boxing has been a godsend,” he says. “This is not a cure, but it is something that can measurably keep you at your current status.”

Rock Steady Boxing (RSB) was founded in 2006 in Indianapolis, Indiana, to provide an effective form of physical exercise for people living with Parkinson’s. Parkinson's Disease is a chronic disorder that affects movement and worsens over time. There is presently no cure for the disease, which affects nearly one million people in the United States. Those with Parkinson’s may experience tremors of the hands, arms, legs, jaw and face; slowness of movement; stiffness of limbs; and impaired balance and coordination. Rock Steady, a non-contact boxing-inspired fitness routine, is improving the quality of life for the boxers—through training programs designed to meet the fitness levels of those at all stages of Parkinson’s.

In a study from the Cleveland Clinic, RSB participants who completed 12 weeks of training had measurable improvements in symptoms including gait, balance, and quality of life. As a sport, boxing targets more than 20 different areas affected by Parkinson’s, including agility, balance, and mental focus.

Rock Steady was founded by a former prosecutor from Indiana, Scott C. Newman, who was diagnosed with Parkinson’s disease at age 40. Since its flagship opened, Rock Steady Boxing has expanded to over 400 affiliate programs worldwide.

After Terry learned about RSB from a segment on CBS Morning News, he decided it would be a good idea to bring the program to St. Louis. On August 1, 2016, the RSB STL-Crestwood affiliate held its first class.

Bringing it home

Dot LeGrand watched as her brother-in-law’s demeanor transitioned from vibrant to depressed after he was diagnosed with Parkinson’s. “His comment was, ‘Gosh, when I wake up in the morning, today is the best I’m ever going to feel,’” she says. Then she and Larry, Terry's brother, watched the CBS segment about RSB. Larry encouraged Terry to check it out. Terry and Dot made the drive to Indianapolis, where they spent three days visiting with the people who started RSB—talking to boxers and getting a feel for the program. “We were just blown away, and when we got home we told my husband, ‘We’ve got to do it,’” Dot LeGrand says.

A week later, Dot and Terry called the gym in Indianapolis, eager to sign up to start a RSB affiliate in Crestwood. Due to the overwhelming demand of those wanting to start affiliates, they had to wait several months before getting started—giving them optimal time to network to find a location and coaches. “I always say God was good to us,” Dot says. “He sent unbelievable people our way who we didn’t know, but they turned out to be just as devoted as we are. They’re phenomenal.”

Renee Nistler and Jennifer Smith found out about Rock Steady purely by chance—Nistler's yoga coach knew she did boxing training at the gym and asked if she would be interested in helping get RSB started. Nistler says she thought of Smith, who has decades of kickboxing and karate experience. A trip to Indianapolis was all it took for the two women to sign on, and Rock Steady Boxing STL-Crestwood had their first coaches. “We went up to Indianapolis for training, and then our hearts were in it after that,” Nistler says. “We were totally immersed,” Smith adds. “It sucked us in like a vortex.

The two women were impressed with the genuine compassion from those who run the program, and the careful attention paid to training the coaches. “They take the time to really teach you the right way, and give you the tools that you need to come back and make it work,” Smith says.

The first thing Nistler learned at training was “never tell anybody what they can’t do.” Nistler and Smith had the opportunity to sit in some of the classes in Indianapolis and help out. During what is referred to as a “three-four” class—for those whose Parkinson’s is more progressed—Nistler was shocked at what the coaches instructed the boxers to do. “There are people with oxygen tanks, wheelchairs, and walkers, and the coaches are like, “OK, you’re going to come in, and the first thing you’re going to do is go box on these heavy bags, then go over to these mats and roll around, and then come over here and jump rope, and then you’re going to weave through these cones,” Nistler recalls. “I’m thinking, these people are nuts! They’re going to get hurt. They can’t do this.” Nistler and Smith watched with tears in their eyes as boxers got up from their wheelchairs and started punching the bags. “I stood there like an idiot with my jaw dropped,” Nistler says. “Nobody should ever say ‘They can’t do that,’ because I stood there and I was dumbfounded.”

Like Terry and Dot, Smith and Nistler were determined to change lives of those with Parkinson’s in St. Louis after witnessing the classes in Indianapolis. “They were emotionally drained, I guess, from what they saw,” Terry LeGrand says. “It made them eager to get this going.” After outgrowing their first rented space in just four months, they needed to find their own place, Dot says. At their current location (9248 Crestview Plaza), equipment hangs from the walls and ceiling. Boxers work out under a painted ceiling that reads: "Fight Back", with two boxing gloves painted beneath. With around 40 boxers, 6 coaches, and a multitude of volunteers, the RSB Crestwood affiliate is continuing to grow—with plans to knock down one of the walls in the gym to expand.

“Boxing & Balance, Work with a Grin”

Each class begins with a question of the day, posed by one of the coaches—designed as a way for the boxers to get to know each other. “We always have a boxing circuit, and we usually have a strength circuit or balance circuit, agility, dexterity, and sometimes we will do stretching or yoga,” Smith says. “Just a good mix, so that we’re always mixing it up and trying to hit the different components.” The boxing circuits work to target various symptoms of Parkinson’s. “Boxing requires you to have endurance, good balance, mental focus, dexterity, proper breathing, and good flexibility,” Nistler says. “All of these are areas in which Parkinson’s attacks at the same time.” The classes are split up between “ones and twos” and “threes and fours,” based on how progressed the Parkinson’s is in an individual. Classes usually consist of two coaches and five to seven volunteers, so in many ways, it’s a one on one experience for the boxers, Terry says.

Each of the boxers has a “fighter name.” Jim Frey says he is “Roadrunner” because Wile E. Coyote has Parkinson’s disease, and Roadrunner always tries to stay one step ahead of him. Frey, who has been boxing at Rock Steady for about a month, says overall, he feels better. “The boxing—not only does it help with your dexterity, hand-eye coordination, stamina, strength, and everything else, but I find it to be really, really fun,” he says. Aside from the physical benefits, the camaraderie at Rock Steady is undeniable.

“Everybody gets along and enjoys each other’s company. Everybody pushes each other to work hard and help support them when they need help,” Frey says. “I felt right at home as soon as I got here.” During class, volunteers, coaches, and boxers encourage one another to challenge themselves and do their best, and end each session with a chant. Huddled together, hands in the middle, it’s a call and response from coaches to boxers. “Here we are together again, boxing and balance, work with a grin...” is the beginning of one of the chants. “The camaraderie is amazing,” Terry says. “I’ve got at least 45 new friends.”

Nistler and Smith say since starting as coaches at Rock Steady, they have witnessed the power of sheer grit and human will. “Mind over body is really a fact in this room,” Nistler says. “We’ve seen people who come in with walkers that don’t use their walkers anymore.”

“The changes we’ve seen in them is amazing. Not just physical change, but emotional change—the confidence they have, and the happiness,” Smith says. “That’s what we do here. We change lives.”