In the fitness world Janne Kouri is what they call an animal... a regular gym rat. He's got an ironman work ethic and a routine so relentless it puts many a serious athlete to shame. Kouri's not just training, though. He's recovering. Before: total paralysis. Now: walking with a walker.
Kouri puts himself through the paces at a facility he and his family created, NextStep Fitness near Los Angeles. The gym is a community-based facility in the Reeve Foundation's NeuroRecovery Network (NRN), the innovative activity- based rehab program designed to maximize health and function after paralysis.
The NextStep logo is a long and winding road that ends in sunshine. Perfect for a sunny SoCal disposition and a perfect metaphor for Kouri's own life story.
Kouri, born in Sweden and raised in New York, broke his neck in 2006 diving into the Pacific and hitting an unseen sandbar. He was a young, buff guy, a former college football player and erstwhile ski bum. He and his then-fiancée Susan Moffat checked out his rehab options – all over California, in Denver, Atlanta, Chicago and beyond. They weren't hearing the word recovery. Said Kouri, "I wanted to go to a proactive, progressive place, not one where you just learn how to live your life in a wheelchair."
Through a friend they heard about Frazier Rehab Institute in Louisville, the lead center in the NeuroRecovery Network, ground zero for locomotor training. The head of Frazier's rehab research department, Susan Harkema, urged Kouri to come to Louisville to become the first in-patient in the NRN. "She was the only one who gave us hope," he said. "She said ‘we'll push him, get him up on the treadmill.'"
The couple flew from L.A. to Louisville as soon as Kouri's medical complications (respiratory and skin infections) cleared up. He stayed in Kentucky for a year: half the time as an inpatient, half on his own continuing aggressive rehab -- working and stimulating his body.
The treadmill work didn't start out great: Kouri passed out after 11 seconds. He made it to 30 seconds the next time, and after a week could stay on his feet for extended periods. "After about four months of five days a week training, I was able to wiggle my big toe," he said. "But the more immediate results were better muscle tone, cardiovascular health and improved blood pressure." There's also a mental part of locomotor training: "Simply put, it felt great to stand up and ‘walk' again."
When it was time to move back to California, Kouri could move his arms again and maneuver himself in a wheelchair but he wanted to continue the aggressive therapy. He and Susan soon discovered that there were no locomotor training sites on the West Coast. If they wanted it they'd have to build it.
Kouri's next step
With encouragement from Harkema and the NRN, Kouri opened NextStep Fitness, operating as a nonprofit. NextStep was the first NRN facility that's not in an academic or medical center setting (a second will open its doors shortly in Chicago). "We put together a business plan and with friends and family raised about $1 million." Staff has been fully trained by NRN experts. The NRN protocol at the academic centers includes only incomplete injuries but this is not the case for the community-based facilities. "We absolutely have seen progress with the completes," Kouri said. "It may not be leg movement but in terms of muscle mass and tone, cardio-fitness, strength in the core areas, everybody benefits."
NextStep is a gym, but it's become a quasi rehab too. Said Kouri, "One mistake I made initially was to assume that the majority of NextStep clients would use it they way people use a Gold's Gym or Bally's – come in, pay a monthly fee and work out. We found that the majority of our clients hadn't seen any rehab. Zero rehab. From day one we have almost morphed beyond the fitness center model." The difference between the routine at this place and the mainstream is all about the R word. Recovery.
"In many rehab settings they say, ok, your arms work. Let's get you to brush your teeth. What we say," said Kouri, "is, ok, your arms work, fine, let's get to work on what isn't working. Let's get as much back as we can."
NextStep is a gym, but it's become a quasi rehab too.
NextStep opened in the South Bay-L.A. town of Lawndale in June of 2008. A few weeks later Janne and Susan were married. NextStep is booked up full. Kouri and the NRN want to take the model and expand it. The only limiting factor is money. "We want to bring the idea of lifetime wellness into many communities," said Kouri. "People should not have to travel long distances or move their families to get needed exercise."
People should also be able to afford to be fit. The NextStep model is built on that concept. "We offer services at a fraction of what it costs us. A client may pay $135 an hour here; it runs us $340 an hour for the four staff people who work with each client on the locomotor training. We operate at a loss: $400,000 this year."
The gap? NextStep is partially supported annually by the Reeve Foundation through the NeuroRecovery Network. What's left is made up for by fundraising. Friends in New York and Chicago have helped. They are also looking at grants and collaborations, and for corporate support. A scholarship program is in the works to make sure clients get the therapy they need, regardless of financial situation.
One question that remains is, what about getting reimbursement for a NextStep workout? Why don't insurance companies pay? Kouri said one client at NextStep did get it covered by private insurance. A large segment of the industry is unconvinced of the value of hardcore rehab. He has a message for the insurance industry: Activity-based rehab works; the concept is evidence-based. "If companies don't pay for therapy on the front end, it will cost a lot more down the road for all the complications of paralysis."
What's next for Kouri? "My goal is to keep going and going. Who knows where this will take me? I would love to walk but it's not just about that. I want to live as healthy a life as I can. In spinal cord injury, there are all sorts of secondary conditions – if you don't exercise you're at greater risk."
NRN DATA: WHAT IS KNOWN SO FAR
Results of NeuroRecovery Network activity-based interventions and locomotor training will be published soon. What is known is that treadmill training is good for everyone. Here are the highlights of the data:
- Recovery can occur years after injury
- Over 300 people have received locomotor training in the NRN, over 275 in clinical centers, and over 25 in fitness facilities
- The majority of individuals experience improvements in function
- Many have improved their overall health
- Intensity of training and weight-bearing are important
- Developing new measures of recovery not based on compensation has improved understanding
- Individuals receive standardized treatment across NRN sites
- It's spreading: centers teach standardized activity-based interventions to others in their region
Source: S. Harkema, University of Louisville/NRN