NextSteps Chicago: Aggressive, Long-term Rehab
Jon O'Connor's 30th birthday "was like winning the lottery – in reverse." An aquatic incident at a surprise party caused him to break his neck. Since that time, Jon has become a champion of aggressive, long-term rehabilitation. He and his sister Kelly Heneghan, who both sit on the Reeve Foundation Board of Directors, founded and operate NextSteps Spinal Cord Injury Rehabilitation Center, a non-profit exercise facility in Willow Springs, near Chicago, which is a Reeve Foundation's NRN Community Fitness and Wellness (CFW) facilitiy.
Back when Jon was injured, in 2001, therapy beyond one's initial stay at a rehab center was rarely an option. Indeed, Jon says if he'd have listened to his neurosurgeon, he would have just gone home to cope with near total paralysis. "Early on I was told I had a complete injury and would most likely require a ventilator for the rest of my life. I'd be driving this wheelchair with a sip n puff."
Tetraplegics at Jon's level, C3-5, don't typically have his breathing function, or his arm and hand function. But there was nothing typical about Jon's total immersion approach to recovery.
"I heard about the work being done in St. Louis at Washington University. Christopher Reeve was there working with Dr. John McDonald, going through a program of intense rehab." Jon's insurance was by now depleted but he paid his own way to the St. Louis clinic and got his first exposure to activity-based rehab, electrical stimulation and for the first time, real hope that recovery was possible.
Jon's desire for aggressive therapy became a quest. "On the Internet I heard about Project Walk, a training facility in Southern California that would allow me to continue therapy. I moved out there for 14 months and worked out five times a week. They had a number of very good trainers and for me this was an ideal situation. There wasn't anybody else anywhere doing this kind of intense exercise. There were other people with SCI there in my same position. It was a very positive environment. It wasn't cheap, and there were times when their sales techniques were overly optimistic regarding the benefits of the program, but it was an important part of my recovery."
Jon concedes that no amount of exercise is ever going to cure complete paralysis but for him, it allowed him to maintain fitness and to stay healthy. He says exercise is preventative: "If I don't work out I lose muscle mass. The air volume in my lungs is affected. To me, fitness equals health. In nine years I've only been to the hospital for two visits."
Meanwhile, Kelly, who had just graduated from law school, put her career on hold to take care of many details at Jon's construction business back in Chicago. Brother and sister are now partners.
When Jon returned home it was not his intention to open up a fitness center. "I wanted to keep up with my exercise routines so I started amassing all sorts of equipment." He had already owned the building he kept his gear in and had a trainer who helped him. One day in 2004 they decided to invite a few people from the local SCI community to stop by. "Half a dozen showed up and they all wanted to keep coming. We decided to set up a nonprofit fitness center; our goal was to provide technologically advanced equipment and personalized, affordable, aggressive therapy to the greater Chicago SCI community. We set out to help people take their next steps towards a more functional, independent, and healthy lifestyle. People still find out about us by word of mouth and we've continued to grow."
The center serves the greater Chicago area, with clients within a 200 mile range, including Iowa, Indiana and Wisconsin.
NextSteps has a ERGYS functional electrical stimulation bike (ergometer) and one of the only Lokomat robotic gait trainers in the U.S. outside of a hospital setting.
Recently, NextSteps joined the Reeve Foundation NeuroRecovery Network (NRN) as a community fitness and wellness facility. The staff in Chicago underwent extensive training with Susan Harkema and her NRN team in Louisville, KY to standardize a rigorous science-based approach to bodyweight supported locomotor training. To this end, NextSteps Chicago recently acquired a new computerized treadmill and gait training unit (TheraStride Body Weight Support Trainer).
NextSteps is mostly breaking even, says Jon. Some clients are able to get insurance reimbursement but locomotor training, despite a growing literature attesting to its effectiveness, is not covered. "We know the training works. On the acute side, it ought to be mandatory for all newly injured people."
The relationship to the Reeve Foundation evolved over the years. NextSteps was the recipient of a Quality of Life grant. Later, when the opportunity arose for the first Care.Cure.Comedy event in support of the Reeve mission, Jon and Kelly jumped in to help. Out of that effort, a core group of volunteers coalesced, leading to the formation of what is now the Chicago chapter of the Foundation. The chapter recently held its third comedy event at the Chicago House of Blues®.
"We are hoping," says Jon, "that one day our center will be economically viable so we won't need outside support, including that of the Reeve Foundation. Until then, we will continue to serve our clients' needs and make the case that fitness adds to the health and well-being of the community."
To learn more about the NRN see www.christopherreeve.org/NRN.
For more about NextSteps Chicago, see www.nextstepschicago.org.