MISSOULA — Kolter Beneitone cannot feel his feet. There is no sensation in his legs. Suspended in the harness is like being in space, he says. His sweatpants are bunched around his knees, but his sneakers are worn, as if he has run a marathon.
The training harness carries half his weight and it keeps him from falling. Physical therapy students at the University of Montana position his legs, helping with each little step as the treadmill churns below him.
This is as close to walking as Beneitone has come since an auto accident left him paralyzed below the waist last March. For a paraplegic, walking might seem an empty hope, but his progress says otherwise.
“He’s been so positive,” said Michelle Cole, who keeps a close watch on Beneitone, her son. “Part of it is his perseverance. He’s not going to give up. It’s something he’s going to accomplish. His mind is set on it.”
The staff at UM’s New Directions lab was gathered around Beneitone on a recent Monday afternoon, the weather turning toward spring outside. In the lab, it’s training as usual. They guide his steps — thunk, thunk, thunk—on the treadmill, aligning his joints, flexing his muscles and working to restore new reflexes.
It’s not graceful, but grace is the last thing on Beneitone’s mind. He has a rhythm going, and he feels like he’s going somewhere, never mind that doctors have told him he’ll never get there.
“The mind is such a really strong part of recovery — and it takes a positive mind,” Beneitone said. “It’s not about what you can’t do. You just have to do it differently.”
The New Directions lab at UM is on the cutting edge of treating para-lysis by training the body to do what it knows how to do but cannot complete because of trauma to the spinal cord.
Susan Ostertag, a clinical assistant professor in the School of Physical Therapy and Rehabilitation Science, has tapped into a narrow body of research suggesting that stimulating the nervous system “below the level of injury” can induce healing.
In some cases, she believes, it also can give hope to patients of paralysis.
“Stimulating the nervous system is the key,” Ostertag said. “Even if they can’t feel it, and they can’t tell you that’s my right foot or my left knee, their nervous system is still receiving that stimulation.”
Ostertag and her New Directions staff, largely comprising doctoral students in physical therapy, are pushing Beneitone through his weekly locomotor training. After eight months of work they’ve reduced his weight in the sling, and they’ve assisted him in a walker.
The activity-based therapy was created by the Neuro Recovery Network and the Christopher and Dana Reeve Foundation. Despite its origins, those in the lab don’t feel the therapy has caught on yet, and that has many frustrated.
“Get in your chair and live your life — that’s what patients are told by some of the biggest centers in the country,” Ostertag said. “Yet they have the ability to recover in some respect. We’re working to get the word out.”
Ostertag bases the lab’s approach on current but limited knowledge of how the brain and spinal cord control stepping, and how the nervous system learns a motor skill.
She describes the function in analogies. Imagine, she says, a “little brain” in the lower thoracic spine. She calls this little brain the central pattern generator.
Babies learn to walk, but adults don’t think about walking. It’s a reflexive act, and a growing body of evidence has found that some patients can learn it over again, even if the spinal cord isn’t delivering the signals.
“We’re trying to mimic normal walking and get that central pattern generator to fire,” Ostertag said. “If we can get the right amount of stimulus into (Beneitone’s) feet and every joint, there’s a reflexive walking that will initiate.”
While recovery varies from one patient to the next, some have done the impossible. It gives Beneitone hope that with determination and support, he too can overcome the skeptics.
Thirteen years ago in Australia, Kay Ledson received a phone call. Her son, Josh Wood, had been in a snowboarding accident. He’d attempted to jump over a road at the Mount Buller Ski Resort in Victoria when things went wrong.
Seven hours later, doctors gave Ledson the news. Her son had fractured two cervical and one thoracic vertebrae. He was, they told her, a complete quadriplegic.
“I was told I had to accept the fact that he’d never get out of bed, and that he’d be using a power chair,” Ledson said. “They said if I didn’t accept this for my son, he’d have a terrible life.”
Ledson doesn’t mince words when telling her family’s story. After the accident, she didn’t want to hear what her son could not do, but only what he could do. If the doctors had nothing positive to say, there was no sense in saying anything at all.
And so there was silence.
“There’s a business in keeping kids in wheelchairs, and there’s a business in drug companies,” Ledson said. “There’s a business in catheter companies. We need scientific research, and we’re starting to get it.”
When Ledson and Wood began their journey in 2000, there was no precedent to follow, no literature guiding their way. There was nothing saying that meditation, hypnosis, crystals, chakras, reflexology or acupuncture could get her son walking again.
Together, they progressed in the dark, driven by determination and a will to experiment. They wouldn’t take no for an answer, and they didn’t search Google for solutions. They needed to step outside the box of traditional medicine.
“He just visualized it — which tendons and muscles connected his mind to his toe,” Ledson said. “After three weeks of trying, his big toe moved. We knew then he’d walk again. We knew it absolutely and categorically.”
X-rays said it was impossible. Wood had no feeling below the neck. His spinal cord had been reduced to 5 percent of its function. Hardly anything was getting through.
Still, they worked on massaging his feet, his legs and his arms. They stimulated his body “below the injury.” Wood couldn’t feel it — the way his nerves responded.
Yet they did respond, driving Ledson to believe.
“It’s about waking up the body,” she said. “The things they did as a baby, you have to teach them that all over again. It’s a sequential recovery.”
In time, Wood rolled over in bed. Years later, he’d stand on his own two feet with the help of Project Walk in Carlsbad, Calif. (a program similar in philosophy to New Directions in Missoula).
He’d run and jump. He’d throw away his walking stick and become known, to some, as “the walking quadriplegic.”
“I’ve been told this is divine intervention, and I’ve been told this is dumb luck,” Ledson said. “My counter to that is, ‘No, this is science.’ ”
The parallels shared by Ledson and Cole are clear. One mother’s son was left quadriplegic after a snowboarding accident. The other woman’s son became a paraplegic after a car accident.
While the two women come from different continents, both hold their sons in high regard. One knew her boy would overcome his injuries. The other, a trauma nurse at St. Patrick Hospital in Missoula, holds out hope that her son will do the same.
Ostertag believes as well, though fending off the naysayers isn’t easy.
“It takes science to back it up and justify our therapy for the insurance companies,” Ostertag said. “I have to show (Beneitone) is making progress for him to continue. So far, it’s been good.”
Doctors have accused the women of giving those with paralysis false hope; filling their heads with dreams they’ll never achieve. The women don’t buy it, and they’re on a mission to spread a message stating otherwise.
“How come I’m having to figure this out? How come I had to find a person from Australia who’s already been through this?” Cole said. “I felt like there had to be more. If we can prove people can recover, that’s what it’s going to take.”
Ledson expressed similar frustrations. She found herself unprepared for the emotional, legal and financial challenges stemming from her son’s accident.
Despite the long odds, the nights of neurological pain suffered by Wood, the disputes with doctors and insurers, Ledson
didn’t give up. She praised Project Walk and New Directions for attempting to do what many other centers refuse to try, even when the evidence says recovery is possible at times.
“There’s hope after such a shocking, cruel and vindictive injury,” Ledson said. “I can tell you that.”
Information from: Missoulian, http://www.missoulian.com