Punching Out Parkinson’s
Rock Steady Boxing Executive Director Joyce Johnson puts on the gloves to help defeat this degenerative disease
It starts with boxer squats done with one leg up on a giant tire. Then it’s on to planks, split squats, plyo push-ups, mountain climbers and burpees. The round ends with a bout with a large punching bag, and the whole cycle is repeated –– six times in all.
Class members exchange small smiles with each other.
They know the workout is going to be difficult.
Timberlake sets a timer, and the first round begins. Fast-paced music fills the gym, including the all-too-appropriate “Mama Said Knock You Out” by LL Cool J. Timberlake frequently lets out whoops of encouragement.
The workout may be hard, but it pales in comparison to the fight that each boxer faces every day. The common denominator that unites them is Parkinson’s disease.
At the end of the six rounds, sweat-soaked T-shirts, red faces and heavy breathing are evidence that the workout was indeed work. Before leaving, members huddle in the center of the gym, place one hand in the middle and yell, “Way to go, David B!” –– a tribute to a brand-new participant.
The physical activity is one part of Rock Steady Boxing. But the camaraderie and emotional support members receive are equally important benefits. The time each person spends at Rock Steady is his or her chance to take a proactive stance against a degenerative disease for which there is no cure.
Since joining the organization in June 2011, Executive Director Joyce Johnson has witnessed firsthand how participants benefit from the program.
“I’ve been on board long enough to fall in love with the people in this gym,” she says.
For Rock Steady Boxing, Johnson’s nonprofit experience and big-picture vision are just what they need to help knock out Parkinson’s disease and plant firm roots in the community.
A steady beginning
Parkinson’s disease is due to the destruction of the neurons of the substantia nigra in the midbrain, which produce the neurotransmitter dopamine, a vital chemical messenger. Because of this reduction in dopamine, neurons in the basal ganglia can no longer properly send messages, leading to loss of motor control, according to the Society for Neuroscience.
Parkinson’s is one of the most common central nervous system diseases, and it usually develops after age 50.
For Scott Newman, though, the diagnosis came much earlier –– in 2001 at age 41. At first, he didn’t grasp how serious the disease really was.
“I didn’t realize it was potentially crippling,” he says.
But his condition quickly worsened, and he lost his ability to write and type. He had to buy voice-activated software for his computer.
“After about two to three years, I was profoundly affected,” says Newman, who was the Marion County prosecutor at the time.
After noticing how sedentary Newman had become, friend Vincent Perez, a former Golden Gloves boxer, invited Newman to work out with him. The two stretched, shadow boxed and did footwork drills in the basement gym of Newman’s apartment six days a week.
“People looked at us pretty funny,” Newman recalls.
But after about six weeks, Newman noticed a big leap forward in terms of his symptoms. He regained the ability to type. And after another six to 10 weeks, he improved even more.
They knew they were on to something.
In October 2006, the duo found an unused corporate gym near 21st Street and Shadeland Avenue and put in a boxing ring for about a dozen members of Young Parkinson’s of Indiana, a support group Newman founded.
“One of the first exercises we did was to cross our feet over and bend down and touch toes with feet crisscrossed,” Newman says. “About half of them fell over. I thought, We are insane to do this.”
But Newman and Perez made adjustments and continued growing what would become Rock Steady Boxing. They hired Kristy Rose Follmar, a Ball State University grad and former professional Golden Gloves boxer.
“When Scott Newman contacted me, it was serendipitous,” Follmar says. “I was looking for a new job. He told me about this crazy concept involving boxing for Parkinson’s patients. I didn’t know anything about it, but I felt the way he explained the disease and what I knew about training really fit hand in hand.”
To develop workouts and exercises related to the 23 identified symptoms of Parkinson’s, Follmar educated herself on the disease and earned a personal training certificate from the National Academy of Sports Medicine. Timberlake, whose husband Tom has Parkinson’s, came on board in 2006. Tom has been a Rock Steady member since its beginning.
As more and more people caught wind of Rock Steady, it quickly became evident that they needed their own space.
In early 2010, the organization was awarded an Impact 100 Greater Indianapolis grant, allowing it $100,000 to furnish a gym of its own. It’s now housed inside Peak Performance on Indy’s northeast side.
A portion of the grant also went toward hiring Johnson, Rock Steady’s first full-time executive director.
An accidental leader
A native of Cincinnati, Johnson majored in social work at Ohio University after a high school sociology teacher piqued her interest in the area.
“When I went to college, sociology as an academic subject just morphed into an interest in social work,” Johnson says.
She joined a sorority, participated in several musical productions and served as campus services vice president, during which she organized volunteer activities for the university.
After school, Johnson and her husband, Kenneth, moved to Indianapolis so he could attend law school at IUPUI. Johnson took a job as a social worker in the child welfare division of the Marion County Welfare Department. She worked with children who were placed in the Marion County Guardian Home.
“Child welfare is a challenging position for any social worker,” she says. “You hope you’re making a difference and improving the future for kids.”
While Kenneth built his law career, Johnson stayed home with the couple’s four kids: Jeremy, Micah, Jessica and Nathanael.
She re-entered the workforce almost by accident after Kenneth proposed Johnson home-school their children.
“In 1983, there were no home-schoolers,” she says. “We could only find two other families in Indiana who were home schooling.”
In order to learn more, they attended a home-schooling seminar in Michigan. On the way home, they decided to take the plunge into the unfamiliar world of home education.
Along with the two other families who home-schooled, the Johnsons launched the Indiana Association of Home Educators.
“My first official act was to call the Department of Education and tell them I was director of the Indiana Association of Home Educators and, if anyone called with any questions, they could refer them to me,” Johnson says. “The Department of Education had never thought about home schooling, so they were delighted to have someone to refer these calls to.”
Despite its humble beginnings, the organization grew. Almost 50,000 families were on its mailing list, and it drew 5,000 people to its three-day convention each year. It also published a 42-page magazine every other month.
In 1995, Johnson took over as its paid executive director.
“I hadn’t intended to home-school or run a big organization,” she says. “One thing just led to the next.”
Running the organization was a natural role for a woman who grew up in the world of dance and choreography.
“Being a home-school mom was the same sort of thing,” she says. “I designed how field trips would work and what conventions and support groups would look like.”
After her children were out of school, Johnson left the IAHE and took a job with the Greater Educational Opportunities Foundation as its vice president of advancement. There she helped open the city’s first charter school, 21st Century Charter School at Union Station. She was there five years before another opportunity to grow a nonprofit presented itself.
Starfish Initiative, an organization that matches disadvantaged youth with mentors who offer support and guidance with the ultimate goal of the student attending college, needed an executive director.
“All the pieces of my background came together in one place,” Johnson says. When she started, the program served 18 students. Now, they reach more than 250.
After helping Starfish grow for six years, Johnson learned about an opening at Rock Steady Boxing.
“If I look at what I do, I start with a little organization and help it grow,” she says. “That’s what Rock Steady Boxing wanted when they were looking for their first full-time executive director –– a way to grow this program.”
Its mission hit home. Johnson’s mother dealt with Parkinson’s disease for 10 years before she passed away at age 89. Plus, she had a friend who attended classes, and she saw how much he benefited from them.
It was a perfect match.
“I loved the image of fighting your disease,” Johnson says. “I am really proactive. I think you take the bull by the horns and do something about it. I think that’s what my whole life has been about –– trying to make things better for somebody.”
Newman says Johnson possesses the rare combination of getting things done and being a great person to be around.
“She doesn’t take no for an answer,” he says. “And she’s delightful at the same time.”
Follmar says Johnson is compassionate and sensitive and is Rock Steady’s “missing link.”
“She’s extremely intelligent in the world of nonprofits,” Follmar says. “She’s taken them from tiny nonprofits and laid down foundations to help these nonprofits become very successful.
“She’s a wonderful person to work for.”
Rock Steady participants never spar with each other in the ring.
“They do a lot of the same things you do in any fitness class,” Johnson says.
The classes focus on non-contact, boxing-style exercises and start with a warm-up period before going into the workout. Participants take frequent water breaks and end the class with abdominal work and more stretching.
Members are matched to one of four levels of classes based on the progression of their symptoms, age and physical condition.
Most buy their own boxing gloves, which usually increase their cool factor in the eyes of their grandchildren.
“When kids see their grandparents wailing on a heavy bag, their grandma or grandpa is cool,” Johnson says with a smile.
These are not workouts for the passive Parkinson’s patient.
“Our trainers really encourage them,” she explains. “There’s a camaraderie in the gym –– a can-do attitude and spirit. Our participants just love the enthusiasm of our trainers.
“The emotional investment they have in being a part of Rock Steady Boxing is really important.”
Rock Steady attracts a range of ages and backgrounds. Most are older than 60, Johnson says, but it’s not unusual to see newly diagnosed members in their 30s. Everyone from housewives to CEOs has attended classes, and some members come from as far as Lafayette and Columbus, Ind.
Medical research is bearing out what Newman and Perez discovered years ago –– that exercise does indeed help Parkinson’s patients and, in most cases, that help is life changing.
“People are able to walk without a cane,” Newman says. “Grandchildren are hugging their grandparents when they move like they’ve never been able to. They can do footwork drills. They can clap to the music at church.”
Johnson recalls one member who climbed the Medicine Bow mountain range in Wyoming and completed the Mini-Marathon.
“He says those are things he would not have done if he hadn’t gotten Parkinson’s disease and come to Rock Steady Boxing,” she says. “Most people will tell you they think they’d be a lot worse if they weren’t coming. They were degenerating a lot faster before they were coming in.”
Longtime member Mary Yeamen was diagnosed in 2002 at age 58.
“I knew nothing about the disease,” she says. “I was just thankful I didn’t have cancer.”
The support group she started attending quickly grew stale. After seeing an ad for Rock Steady, Yeamen decided to check it out. That was in March 2010. Now she usually attends class three times a week.
“As soon as you met them, you met your family,” Yeamen says of her fellow boxers. “We grew closer; I grew stronger. People don’t realize we have Parkinson’s disease when they see us doing these things.”
In addition to the physical improvements, Yeamen says Rock Steady has given her the confidence to be more outgoing. She shed her former introverted personality and is now talking in front of groups about Parkinson’s and Rock Steady.
“The people –– that’s what I enjoy most,” Yeamen says. “You’re with people who understand what you’re going through. We all take care of each other, and it’s like a second family.”
Follmar agrees that Rock Steady is a large extended family –– and it’s not immune to the ups and downs that all families experience.
“We, unfortunately, are exposed to the disease day in and day out,” she says. “Sometimes people get sick and don’t come back. We’ve attended multiple funerals for people who’ve become our friends.”
But despite the inevitable result of Parkinson’s, Rock Steady remains an uplifting environment.
“It’s an amazing experience to be able to be surrounded by people determined to fight back,” Follmar says. “It’s very rewarding to see the work they put in to be stronger and function better in real life.”
Hope for the future
At her home on a 10-acre farm near Franklin Central High School, Johnson enjoys gardening and spending time with her and Kenneth’s five grandchildren, ages 4 through 9.
That keeps her busy outside of work, but she has her hands full at the office too. Her immediate goal for Rock Steady is to secure its financial sustainability.
“We don’t want to just offer this program to everybody and then disappear,” she says.
Out of the estimated 4,000 central Indiana residents living with Parkinson’s, only about 150 are reaping the benefits of Rock Steady, Johnson points out. The goal remains to continue to spread the word. Johnson would also like to be a part of a research study that validates the importance of their program in counteracting Parkinson’s symptoms.
Perhaps their biggest challenge is that the demand far outpaces the number of people they’re able to reach.
“There aren’t classes anywhere else like this,” Johnson says.
She’s answered phone calls from people all over the country inquiring whether a Rock Steady program exists in their neighborhood.
“We just aren’t ready to do that yet,” Johnson says. “That’s our big goal –– to replicate it all over the country and serve as many people with Parkinson’s disease we can.”
When one is first diagnosed with and learns about Parkinson’s, it’s not at all far-fetched for them to feel hopeless. But the beauty of Rock Steady is that it restores that lost hope.
“The most powerful thing that Rock Steady Boxing brings is not only hope but the reality that you can feel better tomorrow than you do today,” Newman says. “Every day you can say you feel better than the day before, you’ve accomplished a win in that round.
“That’s the power we unlock.”
A strong guiding force in Johnson’s life –– and her “choreography” of success –– is her faith in God.
“Every day, I get up and pray that I will be used by him to serve those he puts in my path,” she says. “The extraordinary success I have had in building and growing nonprofit organizations is because he has already laid out the path, and I simply walk down the path.”
Photos by Jason Gaskins. Hair by Alison Ciochetto; makeup by Trisha Fish, both for Flirt Salon and Spa.