NRN Spotlight: NextStep

Posted by Reeve Staff in Daily Dose on April 24, 2017 # NeuroRecovery Network

Local, progressive and affordable. Those were Janne Kouri’s primary goals in establishing NextStep in Los Angeles, California.

“Today, most individuals living with paralysis are deprived of the resources they desperately need to live long, healthy and happy lives,” said Kouri, president and founder of NextStep. “Without access to progressive care, individuals can experience health deterioration, depression and secondary medical complications which can result in serious illness.”

Kouri knows about life with a spinal cord injury first-hand. In 2006, a shallow water dive into a sandbar left him paralyzed from the neck down. It wasn’t until he traveled to Frazier Rehab Institute, the lead center in the Christopher & Dana Reeve Foundation's NeuroRecovery Network® located in Louisville, KY, and met with Dr. Susan Harkema that he found a path forward.

“Dr. Harkema introduced me to Locomotor Training and she was the first person to give me real hope for recovery,” said Kouri. “I passed out in seven seconds the first time on the treadmill. But eventually, I was able to stay up for an hour, then I started to gain the ability to wiggle my toes. Five years after my accident, when I stood by myself for first time without a walker, I had forgotten how tall I was.”

Kouri wanted to bring this same opportunity to others. With help from family, friends, Dr. Harkema and the Reeve Foundation, he opened NextStep Fitness for himself and anyone else in the community who could benefit from activity-based exercise and Locomotor Training. Since opening its doors in 2008, NextStep has served more than 400 individuals.

Frank Lin started going to NextStep last year. The 29-year-old mechanical engineer sustained a spinal cord injury from a mountain biking accident in 2014.

“The facility was just what I needed. I’ve gained a lot of trunk control and I’ve started to bear weight and stand for several moments, although I can’t stand independently yet,” said Lin. “One of my greatest gains is in taking a shower. I no longer need to rely on grab bars which is a huge accomplishment.”

He has also discontinued using all of his medications and built abdominal, back and shoulder strength through his NextStep workouts.

“The small improvements each day don’t mean whole lot, it’s the countless chipping away that adds up over time,” said Lin. “There is a fire that comes from wanting to work your butt off. It’s not easy but it’s doable. I know others would benefit greatly from the same level of activity-based exercise but they don’t have the means. Means and motivation go together. Those without means have a hard time finding the motivation.”

With affordability to individuals from all socio-economic backgrounds a top priority, NextStep subsidizes 60-70 percent of their membership fees through fundraising. This helps Lin whose insurance wouldn’t pay for his time at NextStep. It also helps Patrick Smith, a 46-year-old court manager who sustained a spinal cord injury in a 2012 car accident. After minimal progress at inpatient rehab, Smith came to NextStep with little feeling and movement. He is now able to walk with the help of a walker.

“Sitting at home is the worst for someone who is paralyzed,” said Smith. “NextStep has given me a sense of hope and purpose. My body really reacted to the Locomotor Training. It gave me the confidence to know how strong I am and what I can do.”

Smith and Lin also enjoy the family-like environment at NextStep and being around others who are striving for the same goal.

“It’s like Cheers, everybody knows your name and what you need,” said Smith. “We’re all in the same predicament and it’s motivating to see each other’s gains. Without a facility like this, I would probably be back in a hospital with a bed sore.”

To further build on this success and help more people like Lin and Smith, NextStep has expanded to Atlanta, Kansas City and Orlando and strives to have these centers join the NRN in the future. Kouri’s goal is to open centers in communities around the country to ensure an improved quality-of-life and a continuum of care for this underserved population.

“It has been a difficult and wonderful journey,” said Kouri. “It’s an amazing supportive network we’ve created. Christopher Reeve is an incredible inspiration and someone I look up to. He didn’t quit until the day he died and I’m going to take that same mentality into my fight as well.”