FEATURE: Amazing Adaption

By on July 21, 2015

Blazing a path of adjustment in a wild place

Josh Bogle radiates a positive attitude.

Josh Bogle radiates a positive attitude. (Photo: Sargent Schutt)

Jackson Hole, Wyoming – Three years ago, a deep-sea fishing accident in Kauai forever changed the course of Josh Bogle’s life. After getting stabbed in the foot by a fishhook, he developed a staph infection so resistant to antibiotics that it left him a quadruple amputee. When he finally got to Denver, another story in itself, doctors were only able to save his five left hand fingers below the knuckle. He lost his right hand and his two legs below the knee. He woke up from a coma speechless yet humming along with the nurse as she sang Bob Marley’s “Three Little Birds.”

“My brain recognized ‘Three Little Birds’ and I wanted to sing, so I woke up,” he said on a summer day after welcoming me into his family home with a toothless smile, another casualty from the infection that ravaged his body.

His mom and stepfather, Judy and Matt Montagne, remember sitting in the hospital reading letters of encouragement to him. They made a makeshift letter board that allowed Bogle to spell out his first word before his words came back.

“You were waking up and seeing your black hands and feet,” Matt Montagne said to Bogle. “Do you know what your first word was? It was a-w-e-s-o-m-e.”

Bogle’s hazel eyes lit up as his little dog Macy, who was there with him every step of the way, hopped onto his lap to help him tell his story. Coconuts and the right attitude were the self-prescribed “rocket fuel” for his survival from the tragic events that followed.

“I guess coconuts saved my life,” Bogle said. A year after his amputation he was back in the Denver hospital with a superbug, too sick to undergo a life or death heart surgery. “I asked them, if I wasn’t going to be alive for much longer, could I go to Hawaii. I went and I came back so strong from eating salmon, seaweed and drinking organic coconut water every day. Coconut water is so close to our body’s natural PH. During World War II they used coconut water for IVs.”

Bogle’s story, as uplifting as it is tragic, shows a unique human spirit that amputees possess here in adventure-driven Jackson. The challenges that lie ahead for him are fraught with insurance battles and everyday logistics, like how to drive a car. These issues will force him to take a slower path. But with access to new technology in prostheses, he is able to dance, bike, snowboard and hike again. He dares to dream of a career as an actor in Hollywood and wants to create a community that gives amputees easier access to prostheses. Maybe he will inspire a new device that gives athletes more range of movement like Teton Adaptive Sports’ Steep and Deep Coach Brian Bartlett.

Teton Adaptive Sports, an outgrowth of the adaptive program at Jackson Hole Mountain Resort, is a nonprofit organization established in 2006 that takes athletes with prosthetics skiing, climbing, river rafting and biking. It is a local chapter of Disabled Sports/USA, a national organization established by Vietnam Veterans that, along with Wounded Warriors, promotes recreation for people with disabilities.

Bartlett, another amputee athlete, had his right leg torn off by a car in a freak accident on his way to Lake Tahoe, where he was headed to be in a ski film. He has since patented the Bartlett Tendon Hybrid Prosthetic Knee, prosthesis made of military components with synthetic soft and hard tendons. The rubber tendons allow Bartlett to jump cliffs in the backcountry on skis and made him fall in love with the sport of mountain biking because he was finally able to push off the pedal. Most importantly, they are designed to get wet and even allow for deep sea diving.

“I don’t care if it’s a broomstick, people should use their prosthetics as much as they can,” Bartlett said in a phone interview as he hiked down Steven’s Pass outside Seattle, Wash. “They are all taught not to put too much pressure on them. I don’t believe in that. It wrecks the body to have to overcompensate on one side.

“I’m looking to use artificial muscle for movement in field prosthetics. The computer chip and everything is great. But field prosthetics can go into a dirty environment more like a Swiss Army tool. Using artificial rubber, you get the feel of muscle.”

He urges adaptive skiers, most of whom take their prosthetic legs off and use poles to create three tracks, to use a flexible randonee boot with their prostheses to put a little weight onto the affected side and help drive the ski through turns.

Kira Brazinski learned how to ski on one leg when she was threes years old. Twenty years later, she is a yoga instructor who teaches a flow class at Inversion and is widely respected by big mountain skiers for her daring spirit. A waitress at Lotus Cafe kindly greets her as Brazinski tucks her leg under the table. “I work here too,” she tells me.

Born in Jackson with a birth defect that left her without a left femur, Brazinski has worn a basic prosthetic leg for most of her life. She opted to amputate her left foot when she was eight years old so that she could wear cute shoes but has never been able to wear a left ski boot before. She has always taken her prosthesis off to ski because she can’t get it wet and it wasn’t designed for adaptive skiing.

Her new knee, however, has a microprocessor that uses Bluetooth technology to sense how quickly she is walking and match her right knee based on friction. She hopes to try it out in a boot with Bartlett once she gets her new prosthesis. She is also excited to stand up on a paddleboard.

“Right now it’s easier for me to do a handstand on a paddleboard than stand up on one,” she said.

She started a handstand challenge last year and has been practicing inversions every day since.

Kira Brazinski makes a point to get inverted every day.

Kira Brazinski makes a point to get inverted every day.

Insurance obstacles

It has been two years since Brazinski began the process of getting her first prosthetic leg as an adult using her parent’s medical insurance. Shriners Hospitals for Children in Salt Lake City used to outfit her with a new prosthetic every one to two years as she grew, free of charge. But that coverage ended when she turned 18.

“It was always a fun mother daughter trip to go down to Salt Lake for a week, stay at a hotel and get a new leg and a pedicure,” she said.

Now Brazinski is dealing with pain in her pelvic muscles from her unstable hip joint. She has plantar fasciitis from putting too much pressure on her right foot. She has always struggled to ride a bike. Yet her insurance is refusing to cover a new prosthesis for her active lifestyle.

“I’ve been riding my bike before and my leg has fallen off,” she said with a laugh. Still, she refuses to let her prosthesis get in the way of her adventures.

“I’ve never felt like I couldn’t do something,” she said. “I’ve never viewed myself as disabled.” When her mom and brother said they wanted to climb the Grand Teton she said, “I’m coming.”

She has not ventured that high yet. But the last time she took a hike, her prosthetic started to make funny noises and she was worried she wouldn’t make it down.

Discouraged by the wait for insurance to get the new prosthesis build, her parents refinanced their house in Rafter J to pay for her new knee. She is moving forward with her prosthetist in Idaho Falls to make a leg with a suspension cable system that allows her to press a button and turn a knob to relieve pressure at the socket.

Every prosthetic leg, like every person with an amputation, is different. Ever since 1861 when James E. Hanger returned from the civil war with a peg leg – surgeons reported 60,000 amputations during that war – companies like Hanger Prosthetics and Orthotics have been improving upon designs with hinges for ankles and knees. Thousands of veterans from Iraq and Afghanistan also have returned home missing one or both legs and are benefiting from advancements in prosthetic technology.

Craigslist for prosthetics

Parts for prostheses are often interchangeable. Some can even be bought secondhand on Ebay.

Bogle, who wears a Hanger titanium leg, has three wheelchairs, a myoelectric knee and a pair of feet with a battery that weigh 2.5 pounds each that he couldn’t wear in his closet. His insurance will only cover a new set of feet every two years. His excess prostheses and limited healthcare coverage gave him the idea to create a “Craigslist,” or classifieds website, for prosthetics so that as technology evolves, new devices are more accessible to amputees.

Bogle, a former professional snowboarder, is in search of three prostheses that he can get wet and take out on adventures. His partial grip makes it hard to find a prosthesis for his left hand but he has found a device for his right hand that uses iPhone technology to control an artificial grip. He also is hoping to buy a car or van with a power lift gate that will make it easier for him to travel. He has created two GoFundMe.com crowd-sourced funding campaigns, one to help pay for the prostheses, which cost $6,500 per foot, and one for the van.

When it comes to interchangeable parts like knees and feet, a Craigslist for prosthetics is not a bad one, said Washington, D.C.-based prosthetist Elliot Weintrob. But the liability issue makes it difficult, not to mention the economies of scale.

“When Toyota produces a car, it produces half a million. The numbers in prosthetics just aren’t there,” Weintrob said. “Nothing ever gets cheaper. The cost only goes up.

“Where trading gets tricky is there’s no warranty. And you still have to have custom sockets made. The liability has gone through the roof. If I don’t know the history on that foot, I wouldn’t recommend it.”

Weintrob, who has a private practice in Northern Virginia and a second home here, has been coming to Jackson since the early 1990s to ski. He helped raise the seed money for Teton Adaptive Sports’ Steep and Deep Camp.

As the medical field has changed, he has come to learn what buttons to push with insurance companies to get a new arm or leg for his patients. But his influence is limited. “In order for someone to receive a prosthesis I am almost like the pharmacist,” he said. “The prescription has to come from the doctor.

“When an insurance company says, ‘No,’ that means you push harder,” he said. “I do feel at times like I am in the trenches with my patients because I know that I can provide top-notch care, but it’s not in my hands. The insurance company is saying, wait a minute let’s see if we can do it for less. Maybe I’m too much of a liberal Washingtonian. Quite often I have to get on the phone with the doctor and justify it piece by piece. If you don’t know what you are doing, that physician knows how to tear your argument apart. He is being paid on how much he saves the insurance company.”

More than 100 prosthetic facilities closed last year because the number of reimbursement cases has grown so high, according to the American Orthotic and Prosthetic Association. An audit by the association in March found that 15,000 new appeals are received per week indicating that there are as many as 1.5 million Medicare reimbursement cases now in limbo. Orthotic and prosthetic appeals represented an average Medicare payment of $35,338 in 2013, the association said.

Jackson life, reworked

Living in Jackson Hole is a double-edged sword for amputees: they are inspired by nature and the active lifestyles people lead around them, yet they are far removed from prosthetists, larger support groups and the lobbyist groups working to improve medical coverage for prostheses.

“I think the inspiration of the Tetons outweighs the difficulty they have in getting quality prosthetic care,” said Cherene Vanian, manager of Teton Adaptive Sports’ summer programs. The program serves people with all kinds of disabilities by providing equipment and scholarships. Amputees are among its leaders.

“It’s not like they need us, it’s like we need them,” said executive director Kurt Henry. He pointed out that Brazinski teaches yoga for the program and his lead fishing guide, Wayne DeWall, is also an amputee.  “A lot of these guys can be really inspirational. I just met Josh [Bogle] at the July Fourth parade. He is like one of the most positive individuals that I’ve met.”

Bogle, who spends half the year in Kauai on a coconut farm, sees his future as boundless. In addition to starting a website to trade prostheses, he is considering moving to Los Angeles to join the Screen Actors Guild. His family friendships with actors like Harrison Ford and Bill Paxton have given him the strength to keep that dream alive.

“I think I would have talked myself out of it before the accident,” he said. “Now it’s easier for me to live in the moment.”

“Josh would never dwell on what he couldn’t do,” said his stepfather Matt Montagne. “Instead, he would focus on what he could do and that really inspired us.”

Bogle countered Montagne’s comment.

“That cliff would be a hard one to come back to,” he said, adding that if he went to the dark side he might not recover.

Thanks to scholarships through the Wounded Warrior program, he’s attended the Hartford Ski Spectacular, one of the largest winter sports festivals for people with disabilities, and he just returned from a camp in Colorado where he went fly fishing, biking and river rafting.

Similar to many other kids in Jackson, Brazinski grew up doing outdoor activities. But she never joined a group with whom to share information on prosthetics. To her, wearing a prosthesis is like “wearing an uncomfortable pair of shoes.”

She considers herself lucky to have a family who will support her as she learns about advocating for herself with insurance companies.   

“It probably hurt me in some ways not doing research,” she said. “But it was a gift in other ways because I’m always looking for new adventures.”

Bartlett hopes to help her along the way. His company Leftside Industries Inc., which was sought out by the military and used to service veterans and people in active duty exclusively, is beginning to manufacture more products for the private sector and is in the process of creating a foundation so that he can give prostheses to people with no medical coverage.

“Military, rich people or people who use crowdsource funding are the only kind of people who get this stuff,” he said. “I don’t think that’s right. Kira [Brazinski] is one of the reasons I’m doing what I’m doing. I want to take a step around the red tape.”

About Julie Fustanio Kling

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