Stepping toward hope

barbara

Pioneer Founding member
For anyone who is wondering where Amanda got stem cell treatment, it was from Dr. Geeta Shroff in India.


Colorado advocate for movement therapies steps out in exoskeleton
By Michael Booth
The Denver Post
POSTED: 10/28/2013


BASALT —Amanda Boxtel has not walked under her own power for more than 22 years.

Teaching herself to step once again has been neither pretty nor cheap. Her first tentative strides are rarely accompanied by trumpet crescendos or the singing of angels.

Instead, what she hears is the clank of her hex wrench against a stubborn joint of her futuristic exoskeleton walking device. Or the pleading in her voice as she seeks money to spread a growing philosophy that the paralyzed must get up and move at every opportunity.

Boxtel is one of the most high-profile advocates of movement theories that include locomotor therapy, the idea embraced by Englewood's Craig Hospital and other renowned centers that the spinal cord can learn. Cut off from brain commands by trauma, the nerve system in the spine can take over body movements if trained by repetitive steps.

While recovering patients such as James Nall of Arvada sweat and grunt quietly in locomotor gyms, Boxtel jets around the world as an ambassador of new technology and positive thinking.

Boxtel, who broke her back in a Snowmass skiing accident in the 1990s, perseveres through a combination of New Age optimism and anatomically frank assessment of her body's failings. A rapturous description of an upcoming trip to Hungary to demo her "walking" suit is immediately followed by speculation of how many times she'll need to urinate on a trans-Atlantic flight.

Staying in constant motion, physically and intellectually, is key to Boxtel's self-taught effort to "rewire" her brain and spinal cord in hope of truly walking.

"I've made it a life purpose and mission to maximize my quality of life," says Boxtel, who watches the Roaring Fork river roll by mere feet from her Basalt apartment. "To me, that means moving. Our organs like to hang. When we're in a sedentary lifestyle, we begin a slow death. I believe that. I know. I lived it after 22 years of paralysis."

Boxtel has been a "stem-cell tourist," flying to foreign countries for controversial injections purporting to regenerate nerve connections. She has alternated long periods of "moving on" with life — accepting her wheelchair and focusing on a career — with intensive periods of new physical therapy.

Her accident at Snowmass decades ago was a mundane fall that still chagrins Boxtel, who grew up a graceful dancer and swimmer in Australia.

She had come to Colorado for a guy and stayed for the mountains, but was not an extreme skier. She had had a premonition of danger that day, she said, and skied under the lifts to stay safer. No matter, her ski tips crossed on an easy slope and she did a somersault, folding her lower back.

Now, her chief method on a renewed quest to walk is a bionic exoskeleton, a computer-controlled walking suit that senses her intention and completes each step.

The suit's manufacturer pays her when she demonstrates the technology at hospitals. But she raised money to buy her own six-figure skeleton. She spends her own funds on a therapist — $50 an hour, up to five times a week — to help her don the suit and guide her through rehabilitation paces at a center in Basalt.

These exacting, exhausting steps are not the work caught by TV science specials, or the glamour photographs by Ekso Bionics, the manufacturer. The high-tech suit makes Boxtel feel alive, but not invulnerable. If her feet are too far in front of her hips when the suit stands up, she will teeter. Concentrating on the terrain ahead prompts a sheen of perspiration on her brow.

The skeleton's joint motors whir and click. Her therapist for the day, Angela Hannula, walks a half-step behind, holding a control that adjusts stride and speed and keeping a hand poised over a waist-level safety strap. A variable-assist mode lets Boxtel impel more of each stride by shifting her hips forward. A piercing beep tells her when she has hit a "target" and should begin the next step.

Friends and strangers greet her or stare in wonder as she robo-walks. Boxtel beams at them all and evangelizes for the upright. "Go, Amanda!" some shout.

When her path walks her across a freshly painted blue wheelchair sign on a handicapped parking space, she scoffs at it. "We're going to change that universal symbol," she says.

Her optimism isn't blind

Boxtel's optimism is pervasive, but not blind. In her journey to achieve more movement, she admits she is mixing the promising with the unproven.

Doctors at Craig, and many spinal-cord patients injured long ago, largely discourage the kind of trips to foreign stem-cell centers that Boxtel has taken in recent years.

Boxtel claims that her stem-cell injections, trips that can cost $10,000 or more, helped her move from complete lower-body paralysis of more than 16 years' duration.

"Now I've regained abdominal muscles, the ability to void urine on my own, some abductors, some trace quadriceps, flickers of hamstrings and gluteus muscles," she said.

Hate mail and obscene phone calls have followed her open discussion of the stem-cell treatments in blogs and other forums. Her response, to doctors and the paralysis community alike, is "Follow me if you're curious. I'll make my own decisions."

Bearing weight on her legs is key to further recovery, she believes. After giving up a career in disability sports a couple of years ago to dedicate all her time to recovery, she has tried every device she can find or concoct. One was an air bubble that zipped around her like a skirt, supporting her as her legs moved on a treadmill. Another is a "Galileo" muscle-vibrating device that sits between parallel exercise bars in her living room.

Since starring in a National Geographic television segment about the exoskeleton, Boxtel is in great demand as a keynote speaker and demonstrator around the world.

She uses the appearances to fund her rehabilitation and also to raise money for more clinics to buy exoskeletons to help spinal-cord or stroke victims move more.

She crows that for an October trip to Wichita, she was the first ever to check an exoskeleton in a box on an airline and have it travel free as a mobility-assistance device. She doesn't think she'll be checking the suit for long.

"Next, I'm going to walk down the ramp and onto the plane in the exoskeleton, and drive the TSA crazy," she laughed, referring to the Transportation Security Administration.

After walking in her robo-suit on a warm fall afternoon in Basalt, Boxtel executes a digitally controlled collapse into a chair. She is flushed and grinning. The list of benefits from walking, even with a helping hand from the future, goes on and on: A standing kiss. Grabbing a glass from a cupboard. Eye-level talk at a cocktail party.

But now, resting near the soothing rush of the Roaring Fork, Boxtel comes up with a completely new one. In the paradox of many paraplegics, her legs show little movement but do manage to transmit signals of severe pain. These are the lingering effects of neuropathic injury.

The pain is often a 6 or 7 on a personal scale to 10, she says.

"My legs right now? They're fatigued. But I have zero pain," she says. Losing the pain also allows her to think more clearly.

"When you sit, the body atrophies," Boxtel says. "Now there are no excuses. No reason for us to ever hear the words 'You'll never walk again.'

"Instead, the doctors will say, 'You'll just walk differently. ... Let's show you how.' "

Michael Booth: 303-954-1686, mbooth@denverpost.com or twitter.com/mboothdp


Read more: Colorado advocate for movement therapies steps out in exoskeleton - The Denver Post http://www.denverpost.com/paralysis/ci_24400113/colorado-advocate-movement-therapies-steps-out-exoskeleton#ixzz2j8jO276e
 
Top