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Part II: Straining to Progress, as Family Challenges Mount

By
Pauline Arrillaga
AP National Writer
Thu, May. 08 2008 09:41 AM ET
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Others, too, 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 its cost is beyond reach for many, she says.

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?"

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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, rebuilding his triceps, biceps and back muscles. They'd place him on the floor, asking him to roll from his back to his stomach. Initially, he couldn't. Within a few weeks, it was one roll. Then two. Then 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, even manage a few tiny pushes on the sliding board.

Still, the stress could be overwhelming.

One morning, John exploded in a sudden rage, cursing 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'd tried to make it all sound like an adventure, knowing full well this "adventure" could bankrupt them. In North Carolina, they'd had a $1,365 mortgage. Marci found a friend to rent the house, but she and John still had to pick up part of the monthly 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 fundraising and family donations to cover a year at Project Walk. It wasn't cheap: $100 an hour, $3,600 a month. And with the higher cost of living in California, and the cost of hanging on to their house, they'd be out as much as $100,000 over the course of the year.

John and Marci enrolled Chase and Kacie 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.

John sometimes wondered if they should just head home to North Carolina and make their house there wheelchair adaptable.

Any real recovery, they now realized, would be slow. The "Gait Trainers" at Project Walk, those who were up and mobile, often had taken not one year but several to reach that point.

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