Day 1 at Project Walk fell on their 13th wedding anniversary. In years past, John and Marci Pou might have gone to dinner.
Instead, thousands of miles from home, Marci watched as John fought to maneuver his broken body. It was June 26, 2006, the start of a regimen that would push John to the limit physically and challenge both of them emotionally and even spiritually.
Taking hold of John’s sneaker, Chris Corpuz, a Project Walk recovery specialist, pulled his left leg straight out in front of him.
“All right,” Corpuz directed, “bring your knee up to your chest.”
John focused, trying to visualize the movement, something that 10 months earlier would have been as natural as blinking. But his leg hung immobile, until the trainer himself slowly pushed it in.
“Push it out,” Corpuz said. Again John tried, but he just couldn’t make a connection between what his brain wanted to do and his lifeless limb.
Corpuz then fanned John’s leg out to the side and said, “Bring it in.”
John’s left knee suddenly arched in a spasm, and Corpuz asked: “Are you firing that, or is that just going on its own?”
John flashed a rare grin. “That’s just going on its own.”
John and Marci, along with their two young children, had left their home in Iron Station, N.C., seven days earlier on this cross-country quest to find him help. Their destination was Project Walk, a spinal cord injury recovery center in Carlsbad, Calif., that pledged improved function through exercise therapy.
They had vowed to give it a year, and if he didn’t show gains, the Project Walk staff would recommend quitting the program.
Improvement, scored at six-month intervals, would be rated on a 0-to-40 scale that measured John’s ability to roll, sit, kneel, stand and, the hope was, to walk — with spotting, assistive devices or even nothing at all.
To start out, John scored a 4.
‘Does everybody walk out?’
Marci kept a diary, chronicling their journey.
Day 5: “Began the day w/leg workout. John was able to get basic leg connection on (right)!”
Day 8: “John’s able to stretch arms above head & touch his hands together.”
Some Project Walk clients had, literally, walked out the door, getting around with pole-like crutches, canes or walkers. But John and Marci were told they would have to be patient.
Don’t set timetables. Don’t compare. Setbacks happen. Progress comes when it comes.
At first, though, they weren’t even entirely sure how the therapy was supposed to work.
They knew about the late actor Christopher Reeve, who in 2002, seven years after he was paralyzed, began feeling light touch and pin pricks and regained some motor function after making exercise a hallmark of his rehabilitation.
Reeve’s workout included a bicycle that uses electrical stimulation to contract the leg muscles and help them to pedal and a treadmill that simulates walking. A research team, led by neurologist John McDonald, published a paper crediting the activity-based therapy with much of Reeve’s improvement.
The underlying premise is that even quadriplegics have to “use it or lose it.” If a paralyzed person never tries to move, any neural connections remaining between the brain and the spinal cord atrophy. Exercise those limbs, and the connections may be restored.
Some researchers believe the spinal circuitry alone can be retrained to control walking through “sensory patterned feedback” — using treadmills or other devices to break down and repeat walking movements.
A quarter million people in the United States live with a spinal cord injury, and there are some 11,000 new injuries each year.
Some go to great lengths to find a magic bullet, heading abroad to have shark embryos transplanted into their bodies or trying other unproven treatments. But activity-based therapy “is not some kind of miraculous pie-in-the-sky thing. This is real stuff,” says a leading spinal cord injury researcher, Dr. Wise Young.
Project Walk was founded in 1999 by Ted and Tammy Dardzinski. Ted, a former triathlete, and his wife Tammy were personal trainers running an athletic performance center in the San Diego area when a quadriplegic came to them wanting to get back on his feet.
Using trial and error, Ted developed a workout routine. Less than two years later, the client, Mike Thomas, took his first steps, using crutches. Through Thomas, other paralyzed clients sought out the Dardzinskis and Project Walk, now a nonprofit, was born.
By the time the Pous arrived, the center had about 65 clients on site and many more who had visited and returned home to tackle the therapy.
Still, the founders’ lack of medical expertise has raised questions, while others are wary of the program’s message.
On the one hand, says Susan Harkema, rehabilitation director of the Kentucky Spinal Cord Injury Research Center, “There’s a need for Project Walk,” which she sees as making up for a shortage of programs for paralyzed people.
But she adds: “If you’re coming from the clinical world, you don’t market that you’re going to get people to walk again. And the feel of it right now is that’s what people are paying for: To go and to walk again. ... But does everybody walk out?”
Small victories
Day 13: “The day started ... on the (Total Gym). John was able for the 1st time to get small pushes. Great day at PW!!!”
Day 23: “During some presses he felt tingling in ankles & calves.”
John started at three times a week for three hours a day. The trainers would hoist him onto a machine to do pull-ups or place him on the floor, asking him to roll from his back to his stomach. Initially, he couldn’t. Then it was one roll, and more.
He worked out on a stationary bike, one trainer in front, another pushing his thighs from behind to make the pedaling motion. They would lay him on a Total Gym machine and jiggle his knees to help stimulate even the tiniest of pushes. At first, if the trainers let go, his legs collapsed beneath him. But soon he could hold himself up briefly.
Still, the stress could be overwhelming.
One morning, John exploded at Marci for not allowing him to die after the accident because he felt so worthless. Later, after his workout, he would apologize.
This, too, Marci recorded in her journal: “He told me how much he loved me and that it was us that he was living for.”
She knew that he wondered endlessly whether they were doing the right thing.
Marci and John had traded five acres for a two-bedroom apartment in a complex where their son and daughter, Chase, now 8, and Kacie, 6, weren’t allowed to even ride skateboards or bikes in the parking lot.
They enrolled the kids in karate to give them something familiar to do. But when they started a new school in the fall, Kacie cried that she had no friends.
“I miss home,” she’d say.
Money was also a concern. In North Carolina, they’d had a $1,365 mortgage. They found a renter, but still had to pick up part of the payment — on top of the $1,800 in rent they were paying in Carlsbad. They had John’s police pension and some Medicare coverage, and had collected enough through donations to cover a year at Project Walk, at $100 an hour.
John sometimes wondered if they should just head home, especially as he and Marci began to realize that any real recovery would be slow.
Both were participating for the first time in the fall Steps to Recovery fundraiser, where the successful ones make their public walking debuts before family and friends. Marci had hoped John would be one of them. But that, she knew, would have to wait.
The day of the fundraiser, the first-timers lined up in the workout room, wheelchairs abandoned for rolling walkers. Ted Dardzinski introduced the lineup and then, “Ready? ... Go!”
Isa and Patrick grasped their walkers and inched forward, sneakers scooting in a slow-motion miracle across the carpet. In his wheelchair, John stared at his two friends — at their legs, really.
He evaluated every bend of the knee, the strength of their hips. Sure, they had help: Four Project Walk trainers surrounded Patrick. Three assisted Isa. But still ...
“Way to go, Isa!” John cried. “Out the front door!”
The packed audience whooped and cheered. Marci was in tears.
This was what fed John and Marci’s faith: proof that the payoff can come.
Patrick managed 30 steps. Then he rolled over to John, and issued a challenge:
“You’re walking next year.”
John smiled and said, “I’d love to.”
Tough decisions ahead
A few weeks later, not long before Christmas 2006, the Pous received John’s six-month evaluation. He had strengthened his core and improved his balance. And yet, on the 0-to-40 developmental activity scale, he had jumped just three points to a 7.
His trainers, nevertheless, believed he should continue at Project Walk. But John and Marci had more to consider.
Their tenant had lost her job and was behind on rent. The home’s hot water heater broke. And most important, the kids were still struggling to adjust.
In their daily prayers, Chase and Kacie pleaded with God, “Please make Daddy happy and healed, and do good in Project Walk.”
Then one day Chase came out of his room with his guitar to sing a song.
“Oh where do I belong? ...,” he crooned.
“I look up at the sky and ask the Lord, oh Lord where do I belong?
“’Cause I just wanna go home ... I just wanna go home.”
Marci knew: She and John would have to make some hard decisions about their family’s future. And soon.
