Part II: Straining to progress, as family challenges mount
Day 1 at Project Walk fell on their 13th wedding anniversary. In years past, John and Marci Pou might have gone to dinner.
Instead, in a strange place 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 and chuckled. "That's just going on its own."
He wasn't entirely sure what "firing that" meant, considering he was a quadriplegic with no mobility in his legs following a diving accident.
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.
Marci had discovered the place, but that didn't stop her tears as they began the trip west.
"Don't be sad," their kids, Chase and Kacie, tried to tell her. "We'll be back."
But Marci had no idea when, or if, that might happen.
They had vowed to give it a year; John's progress would be scored at six-month intervals. If he didn't show gains, the Project Walk staff would recommend quitting the program.
Improvement 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.
---
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, because each client is different. Setbacks happen. Progress comes when it comes.
Those fits and starts would mark an incredible family endeavor. John and Marci shared details openly in interviews with The Associated Press over 18 months, inviting a reporter to join them during the lows and highs of exhausting therapy sessions.
At first, though, they weren't even entirely sure how the therapy was supposed to work.
They knew about 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 regime included a bicycle that uses electrical stimulation to contract the leg muscles and help them to pedal, a treadmill that simulates walking, and underwater resistance training in a pool. A research team, led by neurologist John McDonald, published a paper crediting the activity-based therapy with much of Reeve's improvement. The actor died in 2004.
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 and essentially get turned off. 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 walking movements and repeat them again and again.
A quarter million people in the United States live with a spinal cord injury, and there are some 11,000 new injuries each year. It is a desperate population, often unwilling to go along with the standard treatment: learning to live with the injury.
They hear about the idea of using human stem cells to stimulate regrowth of damaged spinal cord connections, but that's still in research. Some go to great lengths and expense 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.
Reeve's former doctor started such a program at the Kennedy Krieger Institute in Baltimore. A few other centers focus on exercise therapy - some affiliated with respected treatment facilities, such as Beyond Therapy at the Shepherd Center in Atlanta, others privately run.
Insurance won't cover it, and many doctors remain reluctant to recommend it, seeing it as still unproven by independent studies. That leaves folks like the Pous to fend for themselves.
Project Walk was founded in 1999 by Ted and Tammy Dardzinski. Ted, a former triathlete, and his wife Tammy, previously in marketing, were personal trainers running an athletic performance center in the San Diego area when a quadriplegic came in. He wanted 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 was born. It started as a for-profit business, but has gone not-for-profit in recent years.
By the time the Pous arrived, the center had about 65 clients on site and many more who had visited, learned the premise and returned home to tackle the therapy.
Project Walk has its critics. The founders' lack of medical expertise has raised questions, and some quadriplegics conversing in chat rooms have wondered if the program instills false hope, using words like "pipe dream" and "Holy Grail."
"All I can say is, I can't believe it until I see hard, scientific evidence," wrote one man.
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?"
---
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.
And yet there were also clients like Patrick Ivison and Isa Takunori, who had started taking steps - with assistance, admittedly - much sooner. Patrick, a 12-year-old whom everyone called "Little P," had managed his first steps only about a year and a half into his therapy.
Both were participating for the first time in the fall Steps to Recovery fundraiser - the Super Bowl of Project Walk, where the successful ones make their public walking debuts before astonished family and friends.
Marci had hoped John would be one of them, that he would show their mothers, their kids - perhaps, even, some of the doubters - that the seemingly quixotic dream they were chasing could come true. But that, she now knew, would have to wait.
The day of the fundraiser, the first-timers lined up at the back of the workout room, wheelchairs abandoned for rolling walkers. Ted Dardzinski introduced the lineup and then, "Ready? ... Go!"
Isa and Patrick grasped the handlebars of their walkers and inched forward, sneakers scooting in a slow-motion miracle across the carpet. Little P's face contorted with the effort of each step.
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. Another three assisted Isa. But still ...
"Way to go, Isa!" John cried. "Out the front door!"
The packed audience whooped and cheered. Some shook their heads in disbelief. Marci was in tears.
This was what fed John and Marci's faith: proof that the payoff can come.
Little P managed 30 steps before plopping down in his wheelchair, exhausted and elated. Then he rolled over to John. The spiky-haired kid had a challenge: "You're walking next year."
"You tell him, Patrick," Marci piped in.
John smiled. "I'd love to," he said.
---
A few weeks later, not long before Christmas 2006, the Pous received John's six-month evaluation. He had strengthened his core, improved his balance and could finally hold himself in a kneeling position, with help.
And yet, on the 0-to-40 developmental activity scale, John had jumped just three points. He now scored a 7.
His trainers, nevertheless, believed he should continue at Project Walk. But John and Marci had more than scales and scores to consider.
The friend renting their house 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 prayers at dinner and bedtime, 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. He crooned:
"Oh where do I belong? Oh where do I belong? ...
"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.
---
TO BE CONTINUED
---
On the Net:
http://www.projectwalk.org/
---
NOTE - This story is based on interviews by AP's Pauline Arrillaga over 18 months with John and Marci Pou and their children; the founders, trainers and clients at Project Walk; and spinal cord injury experts, including Dr. Donald Leslie, medical director of Shepherd Center in Atlanta; Dr. John McDonald, a neurologist who worked with the actor Christopher Reeve and now directs the International Center for Spinal Cord Injury at Baltimore's Kennedy Krieger Institute; Dr. Wise Young, founding director of the W.M. Keck Center for Collaborative Neuroscience at Rutgers University; Susan Harkema, rehabilitation director of the Kentucky Spinal Cord Injury Research Center; and Laurance Johnston, former director of the Spinal Cord Research and Education Foundations for Paralyzed Veterans of America and author of the book "Alternative Medicine and Spinal Cord Injury." Quotes and scenes were observed by the reporter, were drawn from video recordings made by the Pou family or Project Walk staff, or, in some cases, are as remembered by those who spoke or heard them.
Instead, in a strange place 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 and chuckled. "That's just going on its own."
He wasn't entirely sure what "firing that" meant, considering he was a quadriplegic with no mobility in his legs following a diving accident.
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.
Marci had discovered the place, but that didn't stop her tears as they began the trip west.
"Don't be sad," their kids, Chase and Kacie, tried to tell her. "We'll be back."
But Marci had no idea when, or if, that might happen.
They had vowed to give it a year; John's progress would be scored at six-month intervals. If he didn't show gains, the Project Walk staff would recommend quitting the program.
Improvement 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.
---
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, because each client is different. Setbacks happen. Progress comes when it comes.
Those fits and starts would mark an incredible family endeavor. John and Marci shared details openly in interviews with The Associated Press over 18 months, inviting a reporter to join them during the lows and highs of exhausting therapy sessions.
At first, though, they weren't even entirely sure how the therapy was supposed to work.
They knew about 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 regime included a bicycle that uses electrical stimulation to contract the leg muscles and help them to pedal, a treadmill that simulates walking, and underwater resistance training in a pool. A research team, led by neurologist John McDonald, published a paper crediting the activity-based therapy with much of Reeve's improvement. The actor died in 2004.
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 and essentially get turned off. 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 walking movements and repeat them again and again.
A quarter million people in the United States live with a spinal cord injury, and there are some 11,000 new injuries each year. It is a desperate population, often unwilling to go along with the standard treatment: learning to live with the injury.
They hear about the idea of using human stem cells to stimulate regrowth of damaged spinal cord connections, but that's still in research. Some go to great lengths and expense 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.
Reeve's former doctor started such a program at the Kennedy Krieger Institute in Baltimore. A few other centers focus on exercise therapy - some affiliated with respected treatment facilities, such as Beyond Therapy at the Shepherd Center in Atlanta, others privately run.
Insurance won't cover it, and many doctors remain reluctant to recommend it, seeing it as still unproven by independent studies. That leaves folks like the Pous to fend for themselves.
Project Walk was founded in 1999 by Ted and Tammy Dardzinski. Ted, a former triathlete, and his wife Tammy, previously in marketing, were personal trainers running an athletic performance center in the San Diego area when a quadriplegic came in. He wanted 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 was born. It started as a for-profit business, but has gone not-for-profit in recent years.
By the time the Pous arrived, the center had about 65 clients on site and many more who had visited, learned the premise and returned home to tackle the therapy.
Project Walk has its critics. The founders' lack of medical expertise has raised questions, and some quadriplegics conversing in chat rooms have wondered if the program instills false hope, using words like "pipe dream" and "Holy Grail."
"All I can say is, I can't believe it until I see hard, scientific evidence," wrote one man.
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?"
---
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.
And yet there were also clients like Patrick Ivison and Isa Takunori, who had started taking steps - with assistance, admittedly - much sooner. Patrick, a 12-year-old whom everyone called "Little P," had managed his first steps only about a year and a half into his therapy.
Both were participating for the first time in the fall Steps to Recovery fundraiser - the Super Bowl of Project Walk, where the successful ones make their public walking debuts before astonished family and friends.
Marci had hoped John would be one of them, that he would show their mothers, their kids - perhaps, even, some of the doubters - that the seemingly quixotic dream they were chasing could come true. But that, she now knew, would have to wait.
The day of the fundraiser, the first-timers lined up at the back of the workout room, wheelchairs abandoned for rolling walkers. Ted Dardzinski introduced the lineup and then, "Ready? ... Go!"
Isa and Patrick grasped the handlebars of their walkers and inched forward, sneakers scooting in a slow-motion miracle across the carpet. Little P's face contorted with the effort of each step.
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. Another three assisted Isa. But still ...
"Way to go, Isa!" John cried. "Out the front door!"
The packed audience whooped and cheered. Some shook their heads in disbelief. Marci was in tears.
This was what fed John and Marci's faith: proof that the payoff can come.
Little P managed 30 steps before plopping down in his wheelchair, exhausted and elated. Then he rolled over to John. The spiky-haired kid had a challenge: "You're walking next year."
"You tell him, Patrick," Marci piped in.
John smiled. "I'd love to," he said.
---
A few weeks later, not long before Christmas 2006, the Pous received John's six-month evaluation. He had strengthened his core, improved his balance and could finally hold himself in a kneeling position, with help.
And yet, on the 0-to-40 developmental activity scale, John had jumped just three points. He now scored a 7.
His trainers, nevertheless, believed he should continue at Project Walk. But John and Marci had more than scales and scores to consider.
The friend renting their house 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 prayers at dinner and bedtime, 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. He crooned:
"Oh where do I belong? Oh where do I belong? ...
"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.
---
TO BE CONTINUED
---
On the Net:
http://www.projectwalk.org/
---
NOTE - This story is based on interviews by AP's Pauline Arrillaga over 18 months with John and Marci Pou and their children; the founders, trainers and clients at Project Walk; and spinal cord injury experts, including Dr. Donald Leslie, medical director of Shepherd Center in Atlanta; Dr. John McDonald, a neurologist who worked with the actor Christopher Reeve and now directs the International Center for Spinal Cord Injury at Baltimore's Kennedy Krieger Institute; Dr. Wise Young, founding director of the W.M. Keck Center for Collaborative Neuroscience at Rutgers University; Susan Harkema, rehabilitation director of the Kentucky Spinal Cord Injury Research Center; and Laurance Johnston, former director of the Spinal Cord Research and Education Foundations for Paralyzed Veterans of America and author of the book "Alternative Medicine and Spinal Cord Injury." Quotes and scenes were observed by the reporter, were drawn from video recordings made by the Pou family or Project Walk staff, or, in some cases, are as remembered by those who spoke or heard them.
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