Unique boxing program brings empowerment to Parkinson's patients
Nobody uses the wheelchair accessible parking spot in front of Rock Steady Boxing. It's Thursday morning, and the rest of the parking lot is full at the industrial park just northwest of Indianapolis.
Inside the gym, a gaggle of about 30 people clad in workout clothes lines up along the apron of a boxing ring. Forty-year-old men are elbow to elbow on the ropes with women in their 80s. Black, white, truckers, retired military, housewives and musicians. Some of their hands are taped, ready for the starting bell. Many of them wear a different shade of the same Rock Steady T-shirt, back emblazoned with the slogan "Fight back."
All of these fighters have a common, insidious foe: Parkinson's disease. If any of these patients were trying to straighten a stooped posture or still a trembling limb for the sake of their classmates, Kristy Rose Follmar quickly diffuses any pretense. A drill sergeant with short red hair, broad shoulders and a sleeveless navy T-shirt that reads "COACH," Follmar addresses her pupils as "Parkies," shorthand for people with Parkinson's disease. Her voice echoes in the metal rafters high above as she orders the class to spread out across the concrete floor and stretch.
"Shake everything out!" she says. Then a smile: "On purpose!"
"You've got to laugh about things," Follmar later says. "It gets pretty heavy at times."
Heavy, as in a man falling and the entire class cheering him on as he crawls back to his feet. As in a husband coming to class with his stricken wife to be her "corner man," working out alongside her and helping her face this relentless and progressive attack on her nervous system. As in regulars suddenly not showing out of shame or frustration or depression, or because the disease has temporarily -- or finally -- prevailed, as it inevitably does.
There is no cure for Parkinson's, but that doesn't mean it can't be confronted. In this gym, Follmar and her team teach people how to fight -- literally. Ten years ago, Follmar helped start the first Rock Steady, a non-profit gym that preaches the use of repetitive, non-contact boxing training to improve Parkinson's patients' strength and coordination to help them stave off this unrelenting disease.
The idea has been contagious. What started with six members in a cramped Indianapolis shop has spread to 36 states and Italy, Australia and Canada.
When the stretching is done, Follmar walks over to the stereo and pushes play on an '80s and '90s R&B mix. As Salt-n-Pepa's "Push It" comes on, she sets the digital timer for four-minute rounds. She slips on a pair of red punching mitts and slaps them together.
"All right, Parkies," she says. "Let's go!"
Before she came to Rock Steady, Follmar had no first-hand experience with Parkinson's disease. She's a two-time world champion boxer, and she knows the therapeutic power of a fist meeting its target.
Follmar grew up idolizing her father, who loved boxing. When she was a child, the two of them would sit on the couch and watch fights on TV. As she got older, he taught her some basics of the sport -- how to jab.
She was 13 when her mother brought her home from school to tell her that, after a huge shouting match between the parents the night before, her father had killed himself. Follmar pushed her mom over an ottoman. Over the ensuing days, fist-sized holes popped up in walls and doors. Follmar's mother hung a heavy bag in the garage.
It wasn't until Follmar was a sophomore in college at Ball State University that she started to take boxing seriously as a career. Kristy "The Fighting Rose" Fullmar knocked out two women in the first round of a local Toughman competition, then won back-to-back Indiana state Golden Gloves titles in 1999 and 2000. She turned pro in 2001, narrowly losing a nationally televised decision to Playboy cover girl and veteran fighter Mia St. John, but bounced back to beat Shelby Walker for the North American Featherweight belt. Two years later, pregnant with her first child, she retired at age 25.
Just as Follmar was starting to look for her second career, she got a call from a former Indiana county prosecutor named Scott Newman. At 40, Newman had been diagnosed with Parkinson's. Unable to hold his arms up and struggling with his footwork, Newman reluctantly agreed to work out with a fellow attorney and former pugilist who thought an intense boxing-style regimen might help.
After six weeks in his basement gym, Newman was not only holding his arms up, he was weaving in and out and throwing punches; at work, he realized he could hold a pen again. All of which led to a jolt of confidence. Now he wanted to show others. He wanted to start a nonprofit program for other patients, and he wanted Follmar, with her boxing expertise and a communications degree, to be the executive director.
But Follmar didn't really know anything about Parkinson's or physical therapy. Newman bombarded her with Parkinson's literature. She took courses and attended seminars, became a MASN-certified personal trainer, and started writing the training curriculum from scratch. But it wasn't until after classes started in 2006 that Follmar felt she could do the job.
"In boxing, the best fighters come out of adversity -- there's always a backstory," she says. "These people come through our doors having been through a really traumatic event -- they've just been diagnosed with an incurable disease. You can see emotion pouring out of them when they put the gloves on and start hitting the heavy bag. We've seen people break down into tears. I connect with them on that level."
The connection flows both ways. In September 2008, Follmar was teaching a class when she got the call that her younger brother, Tommy, had shot himself in his basement. "The Parkinson's patients carried me out of the gym," she says.
When Follmar decided to come out of retirement, feeling a return to the ring was what she needed to cope with her latest loss, her Rock Steady fighters rallied around her. That March, she beat Eva Jones Young for the World Boxing Federation title in front of several thousand people, including an entire section of seats filled with Rock Steady students and alums decked out in support of The Fighting Rose. Most of them followed her to Hammond, Indiana, just outside of Chicago, when she defended the title a month later.
Follmar lost that match by split decision. Looking back, she says that about halfway through the bout, she suddenly lost the competitive edge that had once driven her. At that moment, she realized it was going to be her last fight. Rock Steady had changed her.
"Boxing had taken an emotional turn for me," she says. "Now it was about saving lives. It probably saved my life."
Back at the gym, Follmar lines everyone up and asks them to number off. She sends the No. 1s to the weight room for reps on various machines in back; the 2s to the far side of the gym, where speedbags line the cinderblock wall and heavy bags hang from racks like a gallows; the 3s around the ring where more unconventional boxing exercises -- like battle ropes, medicine balls and aluminum bats to bang on tractor tires -- await. And the 4s come with her for focus mitts.
One of the first to face off with Follmar is Chriss Dilk. The petite 58-year-old retired insurance account manager struggles to lift a pair of pink boxing gloves as she umphs a right cross with a faint slap on Follmar's mitt.
When Dilk first came here four years ago, the Parkinson's she had initially written off as carpel tunnel syndrome had almost completely robbed her of use of that arm. And while her doctor couldn't recommend a treatment that worked, she saw a story about Rock Steady in the local newspaper. After struggling through just 30 minutes of the intense boxing calisthenics, she felt more relaxed. After that first practice, she says, she drove home with her right hand.
Now she drives that right hand harder and harder into Follmar's mitt: Slap.
"C'mon!" says Follmar, shuffling slightly backwards.
Dilk pursues, dishwater blond hair pulled back, sweat starting to glisten from her forehead.
The veins pop out of Dilk's neck as she clenches her jaw and puts her entire body behind the cross. Anger. Frustration. Willpower. Resistance. All landing with another crisp slap in the teacher's open palm.
"Woo!" says Follmar. "Don't stop."
Finally, the bell sounds, sending Dilk to the heavy bags. Follmar gives her a pat on the shoulder as she walks away. "I wasn't this active before I had Parkinson's," Dilk says later. But she doesn't come for the activity. "It makes me feel normal," she says.
At the beginning of each class, before the stretching and the fisticuffs, there is a getting-to-know-you session. Students gather in the open floor and each pop a squat atop a Pilates ball -- not an especially relaxing task for a Parkinson's patient .
Today, before the conversation even gets off the ground, an older man tumbles backward to the floor like a trembling turtle, exaggerating his helplessness for the benefit of the sympathetic-but-amused crowd. While he struggles, smiling, to his feet, another woman is laughing so hard, she loses her footing, rolling forward off the sphere and onto her rear.
Once the slapstick settles, coach Christine Timberlake calls the group to order. Her soft voice is a sharp contrast to Follmar's shouts. "What inspires you?" she says.
A man raises his hand. "You," he says, looking around at the others. "The people who come here and work hard."
In boxing, the best fighters come out of adversity -- there's always a backstory. These people come through our doors having been through a really traumatic event -- they've just been diagnosed with an incurable disease.Kristy Rose Follmar
Timberlake understands. Sixteen years ago, her husband, Tom, was diagnosed with early onset Parkinson's. He had been an excellent athlete -- a runner and a coach. Suddenly, nothing physical was easy for him, and it took its toll on him mentally. He was 36. "He kind of gave up," she says. "Nothing inspired him to fight back."
As Tom's health deteriorated, so too did their marriage. They had been equals floating through life together. Suddenly, she was his caretaker. "When you're faced with a chronic illness, it changes your relationship," she says. "Whatever problems are there become magnified. We had to face some things and be really truthful with each other."
A few years later, Tom met Scott Newman in an early onset group and Newman told Tom about his new theory of boxing training to combat Parkinson's. Tom was one of the six students in the inaugural Rock Steady class. Gradually, Christine started to see improvement in Tom's mobility and his attitude; he wanted to get back into life. And all he could talk about was this female instructor who was "kicking his ass."
When Christine Timberlake finally met Follmar, the latter was running the start-up more or less alone, handling business, promotions, accounting, custodial duties, several weekly Parkinson's classes, classes for kids with special needs and an instructional boxing course for women to replenish Rock Steady's coffers. Timberlake, herself an athlete, began as a student in that course. She soon started coming to Tom's class, using her newfound boxing acumen to help Follmar, who noticed that her new assistant was starting to engage other caretakers who would normally sit on the sidelines or in the parking lot or go shopping while their Rock Steady student was training. Impressed, Follmar offered to give up part of her meager salary to bring Timberlake aboard as a certified trainer.
"All I wanted to do was be at Rock Steady," says Timberlake. "My priorities shifted. The people I was working with changed me and realigned my perspective. And there was an urgency that was pulling me."
As a result, caretakers, or corner men and women, are an integral part of the Rock Steady family, whether they're offering moral support from the sidelines or, as many do, shouldering the heavy bag while their loved one slugs away.
Almost everyone in this gym has a story like Dilk's or Timberlake's. They are encouraged to talk about their progress while teetering on Pilates balls as a means of support from within the group. And when a prospective student or member of the media or just a curious citizen visits, many are eager to share their tale of Rock Steady success.
For more than a decade, that word of mouth has been good enough. Testimonials of the benefits of the Rock Steady model have brought more than 500 patients to the gym, led to the hiring of a dozen staffers, from coaches to administrators, spurred the creation of five Indy metro satellites to accommodate interest, and later 164 affiliates across the globe. Anecdotal evidence was the basis of Rock Steady's proposal for grant money, including the $100,000 "Impact Grant" it received from a local women's giving circle and a partnership with Peak Performance Fitness Centers that enabled them to build this new 12,500-square-foot facility.
Apparently, even the medical community, once skeptical of the training's impact and fearful of its potential hazards, has started to come around. Follmar and Timberlake estimate that more than 90 percent of new recruits have been referred by their doctors.
Now Rock Steady is on the cusp of a major breakthrough -- quantitative, scientific evidence that their jabs at Parkinson's disease are indeed landing and having an effect.
In 2007, Stephanie Combs-Miller, an associate professor at the University of Indianapolis Krannert School of Physical Therapy, saw a local TV spot on Rock Steady and, like many professionals, had questions about the safety and effectiveness of the boxing drills. Parkinson's gradually destroys the brain nerve cells that communicate with muscles. As those connections fade, those muscles shake, slow and eventually stop responding. There is no stopping this degeneration.
"It's always been accepted as a progressive disorder," says Combs-Miller. "They're not supposed to get better."
Over two years, the professor and her team checked in with 88 Parkinson's patients, half Rock Steady fighters and half who participated in other exercises, like walking or traditional calisthenics. Every six months, she checked in with them on function, walking speed, endurance, balance, strength, flexibility and overall quality of life. Not only weren't the boxers getting worse -- they were typically showing improvement. Walking faster, exhibiting sounder balance, and most importantly, reporting a higher quality of life. "The boxers were maintaining a higher level of function than those who didn't box," says Combs-Miller, "which is amazing."
Combs-Miller has done numerous studies, and she says a paper documenting her findings is set to be published soon. But she can't yet explain the correlation. She says it could be the boxing exercises, which are multimodal, simultaneously testing strength, endurance, balance and coordination. Or it could simply be the high-intensity interval training.
Or maybe it's something else, something more intangible. One thing that popped up during Combs-Miller's research was the fact that more than any other patients, Rock Steady boxers showed up on a consistent basis.
"They're motivated," she says. "It could be the comradery, the social network. They feel a responsibility to the people around them. They want to go and be a part of that."
That could be a concern to the Rock Steady crew as they build on this academic stamp of approval and try to package their game plan to other affiliates. At their training seminars, they already teach the exercises, the regimen, the business model and even the importance of having fun. But they can't teach personality.
As Combs-Miller says: "You can't teach Kristy."
Follmar doesn't think there's any secret to what she does. She's just being herself. She's just being human. Almost every week, she meets a broken person, someone who thinks their life is finished, that they're caught in the downward spiral, and there's no use fighting. Their friends and family don't understand, and one by one, they fall away, leaving the patient scared and alone. The few loved ones who do stick around watch as the disease slowly robs them of their body language, their facial expressions -- literally their smiles. Many are afraid to touch a Parkinson's patient. "A lot of people tell me they come to Rock Steady because they know they'll get a hug," says Follmar.
The former prizefighter is always good for a comforting embrace, but she'll just as soon pat a student on the butt and tell them to get back to work. Rock Steady is not about pity, it's about empowerment. When they slip on those boxing gloves and focus all their energy, their pain and frustration, into a mitt or punching bag, they are reassuming control of their bodies. They are taking back control of their lives.
After a student dies, Follmar says she sometimes hears from relatives, friends or caretakers, who tell her how grateful they were that their loved one went down fighting. She says she has even heard of some whose families buried their boxing gloves with them -- as if Rock Steady had not only given them back a part of their lives they thought they had lost, but that it was able to add something important to their identities and memories that would not have been there otherwise.
More than anything, Rock Steady is about comradery -- the idea that no one is in this fight alone.
The final bell sounds. Class is over. The 30-some fighters, most soaked through with sweat, drop what they're doing and relax their bodies. But Follmar doesn't let them idle for long.
"Bring 'em in!" she says, extending her hand, palm down.
The students, each at their own pace, trickle into the huddle and each place a hand on top of their coach's. Exhausted, some tremble and lean on each other to stay upright.
"Rock Steady on three!" says Follmar. "1-2-3 ..."