Long, difficult road to recovery

Former quadriplegic launches facility to help paralyzed people

SOUTHSIDER VOICE PHOTO BY KELLY SAWYERS Chris Leeuw has learned to walk again, but he has to consciously think about each step.

Leeuw was still wheelchair-bound six months after his accident. It was at the Neuroworx clinic in South Jordan, Utah, that he made great progress and learned to walk and drive again. Although he still suffers from significant paralysis, he’s in the midst of opening NeuroHope, a rehabilitation center for paralyzed people.

By B. Scott Mohr
Associate editor

All was great for Chris Leeuw when he went kayaking near Edinburgh with two of his friends in August 2010.
A few hours into the trip they approached an abandoned bridge that spanned the river. In need of relief from the blazing sun, they decided to climb up and jump into the water.  

After a few leaps, Leeuw opted for an extra thrill and climbed to the top of the truss, which was about 45 feet above the water. He took a moment to admire the scenery from the treetops before taking the plunge that would forever change his life ... another jumper landed on Leeuw’s head as they hit the water. Two vertebrae in his neck were shattered, leaving his athletic, 200-pound body floating, paralyzed from the neck down. 

“I didn’t know the guy, but he saved my life when he pulled me out of the water,” said Leeuw, who recalls that he didn’t think it was such a dangerous jump. He compared it to jumping off a high platform, with the end result being a freakish accident. 

Following surgery that fused his second through sixth cervical vertebrae, he spent a week in intensive care. The first movement came when his thigh flickered six days later. “The little movements were real encouraging,” said Leeuw, who was moved to Rehabilitation Hospital of Indiana the next day.

He and his family were thrown into the world of quadriplegia, the horrors of a body broken, a life changed and the potential permanence of the situation. Leeuw had been told to prepare himself for life as a quadriplegic, but he was eager to begin physical therapy and wasn’t going to quit until he walked again. Within the first month he could move a few muscles in his right leg and hand. 
Recovery from an neurologic injury is incredibly slow, and it became evident that Leeuw was running out of time as his insurance coverage to remain at the hospital would expire after two months.

“The injured quickly become victims of statistics, as insurance companies put a cap on coverage,” he said. “My insurance company would have bought me a mouth-controlled wheelchair, but they wouldn’t pay for any more therapy. My life was totally changed. I would have done anything to get back to some form of normalcy.”
Leeuw, a graduate of Lutheran High School and a Perry Township resident, was left with two options:
• Move home, hire a nursing staff, remodel his house and find a van transport to attend 60-minute therapy sessions twice weekly until that expired after 30 visits.
 
• Move to nursing home that, while unequipped to care for a quadriplegic, may provide some therapy. 
He and his family researched all the nursing homes in the area and found one that offered physical and occupational therapy. After initially being wheeled in on a stretcher, over the course of four months he learned to sit, transfer from bed to chair, stand, rid himself of catheters and bowel programs and take steps with a platform walker. 
Again, insurance ran out – this time at the subacute level in early 2011. Leeuw was still wheelchair-bound but making great progress. “I simply needed more time, and I was determined to find access to the best resources in the world for neurologic recovery,” he said.

His family was introduced to Neuroworx, a specialty clinic for spinal cord injury in South Jordan, Utah. He and his mother, Monice, who had become his caregiver, traveled to the facility, where he spent 17 months relearning and rebuilding what he could. “My efforts and the access to a remarkable therapy team with a remarkable vision paid off,” he said. By May 2012 he had left his wheelchair and cane behind and was bicycling a recumbent bike, driving a car and returning to independent living.

But Leeuw still suffers from significant paralysis and has to consciously think about each step that he takes. His left shoulder, arm and leg have little mobility, and he can not feel hot or cold or wet or dry from the neck down. Although no longer is in therapy, he has to exercise and stretch his muscles for at least an hour a day to keep them limber and functioning proper. “I still deal with a lot of disabilities.” 

Will he get better? No one really knows. “Every injury is different, and every recovery is different.” 
The experience at Neuroworx had such a profound effect on his life that he was determined to start a similar facility in Indianapolis.
 
And that’s exactly what he has done in launching NeuroHope (www.neurohopewellness.org), a start-up charity that’s seeking to make long-term access to cutting-edge rehabilitation in Indiana a reality. “The NeuroHope mission extends beyond rehab,” said the former Fort Wayne and Miami TV news reporter who graduated from Indiana University and earned his graduate degree from the University of Miami. “We are devoted to bettering the lives of those already living with paralysis by offering specialized, activity-based wellness programs.”

Employed by the tech company hc1.com, Leeuw is partnering with several organizations and is close to securing a building in Fountain Square. He welcomes support of any kind. “We have raised some money, but much more is needed. Support from his family has been strong through rehab and getting his company started.

“We have found a fantastic physical therapist in Nora Foster, and we hope to start seeing patients in January or February. We won’t have all the fancy equipment at first, but that’s not what it’s all about. We are devoted to bettering the lives of those already living with paralysis. We will eventually hire more therapists, trainers and aides who specialize in neurologic recovery and activity-based exercise methods designed to maximize recovery and promote neuroplasticity.
“We will help our patients maintain the mobility they have. The benefits of improving health through regular exercise have proven to reduce hospital readmission rates and health care costs, benefitting hospitals, insurers, patients and caregivers.” 

Indianapolis is viewed as weak when it comes to rehab facilities, said Leeuw, who has traveled to Los Angeles, Louisville, Baltimore and Denver, all of which have topnotch centers. “Why don’t we,” he wants to know.