Prosthetists and Their Patients: A Good Match Can Be Life-Changing
June 2011 Issue
If the "journey of a thousand miles begins with a single step," there is no doubt that the right prosthetic componentry can help a person with an amputation take that first step. Without the right prosthetist, however, the journey would not necessarily be possible at all.
Chad Butrick and Angela Montgomery, CPO
Listening, Learning, Collaborating
Chad Butrick has always had hope. But following one of the darkest times in his life, what he didn't have was a healthcare professional who shared his belief in it. From the moment he met Angela Montgomery, CPO, practice manager of the Hanger Prosthetics & Orthotics patient care facility in Boulder, Colorado, he knew he had found that person.
He describes their patient/prosthetist partnership as being "a melding of the minds.... The relationship between us," he says, "is what makes great prosthetics."
Like most who have had a trauma-related amputation, the need for "great prosthetics" is something that Butrick likely never would have imagined six years ago.
Collision Course to a New Life
Butrick was cruising 70-miles per hour on I-70, thinking about his work as a private investigator. The 34-year old had just crested a hill on his way from Kansas City to Columbia, Missouri, when the car in front of his Nissan Altima spun out of control; there was no time to react and avoid a collision. Simultaneously, another car crashed into the Altima's rear end.
The accident resulted in Butrick having at least three broken ribs, a torn scalp, lacerations across his body, and, ultimately, a right transtibial amputation. Prior to his January 2006 amputation surgery, he had developed osteomyelitis in his right foot and was in excruciating pain, despite the fact that he was taking a host of prescribed painkillers. He says that he hoped the amputation would end his pain, but after the surgery he continued to experience severe residual-limb and phantom-limb pain.
He longed to return to hiking in the wilderness, but his daily rehabilitation sessions only offered him a courtyard with a sidewalk and a tree, and he says he became increasingly depressed.
"This wasn't what I had in mind for my life," Butrick says. When he expressed hopes of resuming an active life to one of his nurses, she responded, "Get new hobbies."
May 2006: A Failed Summit
Rather than heeding the nurse's advice, five months after his amputation Butrick tried to summit Mt. Elbert, Colorado's highest peak (14,433 feet). Severe pain from an ill-fitting prosthesis made hiking difficult. His weight, which had climbed to 312 pounds, compounded his difficulties. He came close-13,000 feet-but he never reached the summit.
Butrick was disappointed, but he says it was also a defining moment. He decided that he wanted to regain control over his life.
In 2008, Butrick convinced his employer to allow him to relocate to Arvada, Colorado. He says he believed that having the mountains nearby and living among people who are interested in health and fitness would inspire him to transform his life. But he also was determined to transform his prosthetic care. While in Missouri, Butrick says, "I was with a prosthetist who didn't understand my needs."
Soon after he moved, Butrick contacted the 18 prosthetists who were covered under his health insurance plan, interviewed each one, and narrowed his choices to two. He chose Montgomery, in part, he says, because her patient care facility is located in a repurposed house in historic Boulder and was so different from all the hospitals and medical buildings he had grown to dislike.
When he had his first appointment with Montgomery, it had been more than a year since he'd seen a prosthetist, and he couldn't wear his prosthesis for more than a few hours at a time. He was in a pin-locking suspension system that was causing his residual limb to piston, and at one time he developed a blistering ulcer the diameter of a Coke can.
"It felt like [the] device [was] hanging off my leg instead of being a part of me," Butrick says.
A Good Fit
Montgomery likens the first appointment with a patient to having a new job. "It's sort of like we're both interviewing one another," she says, "trying to determine whether it's going to be a good fit." Her first appointment with Butrick was no exception. During their first meeting, Butrick listed the sports he intended to do-including the hiking, skiing, and rock climbing he had enjoyed before losing his leg-and Montgomery listened.
Though she says that she privately wondered if her new patient, who was more than 100 pounds overweight at the time, was willing to make the time commitment necessary to be fitted with a sports-specific prosthesis, the fact that she listened to him made all the difference in the world to Butrick.
"When I walked in and we met face to face for the first time," he recalls, "I actually had hope. Here was someone who wanted to listen and build prosthetics that work for me."
Montgomery says, "It wasn't like I didn't think he could do it, but I wanted him to show me he was willing to do the work. I felt like a more reasonable place to start was to replace his socket, in an attempt to get him more comfortable while walking."
So Montgomery fabricated Butrick a new socket with a passive-suction suspension system, and Butrick proved he was willing and able to do the work. He says that just having a socket that fit correctly allowed him to start exercising again. As he began walking more and choosing more healthful foods, he started to lose weight. Encouraged by his progress, Montgomery agreed to build him a cycling foot.
Since then, the two have forged a professional relationship that displays a level of give and take that can only be achieved through mutual respect and honest communication. The pair constantly bounce ideas off each other. Montgomery spends many hours observing Butrick when he climbs, runs, and skis, trying to better understand his needs so that she can build the best possible prosthetic devices for him. She recently accompanied him to a local biomechanics lab to test a running prosthesis. Butrick tells her how well each prosthesis works for him and gives her ideas for improvement.
By spring 2010, Butrick had dropped 100 pounds, and he has since maintained a healthy weight. By learning how to actively recruit the muscles inside his socket, he has been able to effectively reshape his residual limb, which has allowed Montgomery to more aggressively modify his socket. As a result, the two have been able to maximize the control Butrick has over his prosthesis.
Today, Butrick wears a new, lightweight socket and a high-activity leg with interchangeable feet, including a mountaineering foot, a ski foot that clips directly into the ski binding, and other specialty feet for climbing and running. His prosthesis is rated to 300 pounds, which allows him to carry a heavy backpack.
Montgomery made them all.
He now downhill and Randonee skis, bicycles, ice climbs, and rock climbs.
He has reached the 20,075-foot summit of Mount Laboshe in Nepal and mountain climbs in Alaska. One of his goals is to solo climb all 54 Colorado fourteeners-mountains with peaks higher than 14,000 feet. He has five left, he says.
As Butrick's physical condition improved, Montgomery began encouraging him to join Paradox Sports, a Boulder-based, adaptive sports organization that empowers the disabled community in its pursuit "of a life of excellence through human-powered outdoor sports."
Montgomery says Butrick wanted to find a way to make a career out of his hobbies. "He would be working to make a paycheck and, while working, dreaming about other things," she says.
After participating in a Paradox Sports "Gimps on Ice" climbing event, he was inspired to resign from his job and pursue a position with the organization so that he could help other people with disabilities reach their outdoor adventure goals. He is now the adaptive organization's director of operations. (Editor's note: For more information about Paradox Sports and Gimps on Ice, read "Beautiful Rebels: Paradox Sports Celebrates Guts, Gimps, and Glory," The O&P EDGE, June 2009.)
Although Montgomery made him a prosthesis that fits correctly, which has greatly reduced his pain overall, Butrick still experiences significant phantom pain.
"Other amputees might assume he has a perfect residual limb and no pain because he has been able to be so active," Montgomery explains. "But what's unique about Chad is he still struggles. His limb is far from perfect medically. He is still seeking answers.
"You could look at all the things he's done and think, 'Wow, he's Superman,' but the thing that is most impressive to me is his weight loss," Montgomery continues. "He saved his life. I feel fortunate to have been able to play a part in all of it."
The respect is mutual. "Angela...is very humble in how she approaches this," Butrick says. "She has really gone the extra mile."
Butrick is now at a place in his life where he wants to be. "I've got a great life now," he says. "And because I lost my leg, there have been opportunities opened to me. Almost dying makes you realize that we are only here for a short time.
"Without Angela," he concludes, "I am not climbing mountains. I am not rock climbing. I am not skiing. I am not doing my sports. Angela helped me get here."
Ray O'Grady and Robert Manfredi, CPO
A Leg Like No Other
Ray O'Grady knew exactly what he wanted when he first met Robert Manfredi, CPO. He wanted a peg leg-but not just any peg leg. He wanted an authentic replica of a peg leg that would have been worn by an amputee between the War of 1812 and the Civil War.
It was July of 2004, and O'Grady was in rehabilitation; two weeks prior, the 59-year-old New Jersey resident had undergone amputation surgery after a diabetic ulcer on his foot had become infected. The infection traveled to the bone and couldn't be controlled.
"I remember going into rehabilitation right after having lost a leg, and I am thinking to myself, 'What happens next?'" O'Grady recalls. "'Where do I go? How do I continue my work? How do I be productive? How do I hold up my end of things?'
"It's just my wife and myself," he continues. "I am not going to turn around and let all my responsibilities fall on my wife."
So when Manfredi introduced himself at one of O'Grady's rehab sessions, O'Grady says he immediately asked him, "Hey, can you make me a peg leg?"
Manfredi, owner of Manfredi Orthotic & Prosthetic Affiliates in Long Branch and Toms River, New Jersey, said he would do it.
That was all it took for O'Grady to know that "this is the kind of person who is going to point me in the right direction of accomplishing what I want to accomplish."
O'Grady says he wanted a peg leg because he volunteers as an historic interpreter at The Historic Village at Allaire in Farmingdale, New Jersey, a living-history museum where volunteers decked in period garb perform historical re-enactments in a village containing original buildings.
Although Manfredi first needed to make his patient a sturdy, all-purpose leg, he never forgot his promise, and a year later he fulfilled it. While helping a friend clear out an historic New England barn, he spotted what he needed-a piece of mahogany that was at least 100 years old. Manfredi, who is also a woodworker, turned the wood on his lathe until he had created a peg leg that was roughly two inches in diameter. He secured leather to the bottom of the leg for gripping and fabricated a modern socket, which he also covered with leather.
"It's very nice, and it's to period," says O'Grady, who adds that one of the living-history museum's carpenters made him an authentic-looking 1800s crutch. "We use [my peg leg] to show what life was really like and the fact that if something happened to you, it didn't stop you from living even back then. People had to work. They had to live. They just carried on."
Manfredi admits that O'Grady's peg leg was his first, but it wasn't the first time he has fabricated an unusual custom prosthesis. He also crafted a leg for a patient so he could fly his private airplane.
"Like everybody who goes into this field, I enjoy the ability to express myself artistically while helping people," Manfredi says.
O'Grady was determined to do everything he did before his amputation, and five months after his amputation, he returned to work as a heating and air conditioning service technician and instructor at a vocational/technical school. Manfredi and his wife, Jean, helped him become involved with the Amputee Coalition as a peer visitor and encouraged him to join his rehabilitation center's support group. The Manfredis also connected O'Grady with the National Amputee Golf Association (NAGA), and O'Grady says he now plays golf regularly.
"[Bob] took an interest in me," O'Grady says. "He said, 'What do you do? What do you need?' He made it possible for me to continue doing the things I enjoy doing. He pointed me in a direction, saying, 'Hey, these are the people who can help you do that....' I am not the kind of person who lays down when something happens."
In April 2010, O'Grady developed another severe infection, which resulted in the amputation of his other leg. Despite the setback, he still teaches two nights a week at the vocational school and he continues to volunteer at the living-history museum. He also continues to volunteer as an amputee peer visitor.
"He is one of my go-to people," Manfredi says. "When another amputee has a problem, I usually call him first if they need a person to talk to because he has the right disposition and attitude. He's very even-keeled, and generally positive about everything."
Noah Grove and Jeff Quelet, CPO
Linked by Common Experience
Noah Grove says he can tell Jeff Quelet, CPO, anything: How it felt to have cancer. How he feels about losing a leg. How he loves playing soccer and just wants to keep up with his friends.
The two share a story-of cancer and chemotherapy, and of little boys who just want to play hard. Quelet lost his leg above the knee to osteosarcoma when he was ten years old. Noah lost his leg to the same type of cancer when he was four. Noah is now 12; Quelet, 38, a co-owner of Gettysburg, Pennsylvania-based Ability Prosthetics & Orthotics, has been Noah's prosthetist since 2006.
"Jeff is the only one who understands what it's like to have one leg," says Noah, adding that he invited Quelet to his "five years off treatment" party. "He tells my mom when she's worried about me getting my leg wet or something like that to just let me be a kid and 'we'll work it out.'"
Like most sixth graders, Noah is very active. He plays golf, and he plays street hockey. He loves to read and to watch both the History and Military channels. He plays video games on his PlayStation®3 and hangs out with his friends. He's the goalie on his soccer team, and he participates in two practices and one game every week.
Quelet says he knows from his own childhood what Noah "has to go through to keep up with his friends." Active kids are hard on their components, and Quelet says he remembers constantly breaking his prosthetic components when he was a child, adding that things aren't all that different today for Noah.
Quelet often engineers special components to be more durable than standard components, and sometimes he sees Noah as often as every three weeks to fix broken parts and to keep up with Noah's growth spurts. When Noah tore the adapter that connects the prosthetic knee to the socket, Quelet enlisted the expertise of an engineering firm to be sure Noah couldn't break it again. Another time, Quelet replaced parts that corroded after Noah went swimming in the ocean with his prosthetic leg. When Noah tripped in a hole and broke his prosthetic foot, Quelet was ready with a replacement.
There's no doubt that frequent prosthetic repairs can be time-consuming, but Quelet says he doesn't want Noah to slow down.
"Let him be a kid," he says. "If something goes haywire, I can fix it. I have a kid who is living life, and I want to keep him as active as possible."
Noah's mother, Rachael Grove, says, "Only [Quelet] understands how Noah is feeling physically and mentally. "Noah can tell other prosthetists how he feels and that something doesn't feel right, but the only one who really understands...is Jeff. Jeff gets it. He has lived Noah's life."
Sometimes It Takes a Parent to Understand a Parent
Finding Quelet happened by chance; Noah's parents were searching for a prosthetist whose office was closer to their Frederick, Maryland, home. Rachael says that the fact that Quelet is married with three children adds to her and her husband's comfort level.
"Noah had a leg for his first four-and-a-half years, so it's been difficult for us," says Rachael, who, along with her husband Chris Grove, organizes Noah's annual Courage Wiffle® Ball tournament, which raises money for Georgetown University Hospital's (Washington DC) pediatrics department, where Noah was treated for cancer. "It's really important for us as parents to see Jeff as an adult being married with children. It's important for us to have that relationship with Jeff not just because he's a prosthetist but because he's a cancer survivor." Rachael says she can call Quelet anytime, and that he will drive 25 minutes from his Hagerstown, Maryland, office so they don't have to drive as far.
"We would drive to the ends of the earth for Jeff to be [Noah's] prosthetist," Rachael says. "We just think the world of him."
Quelet says that Noah used to have a lot of questions about living without a leg, but more recently the number of questions have dropped.
"He's a tweener-not quite a teenager, not quite a kid," Quelet says. "There will be more questions, but he is not there yet."
And when he is there, Quelet will be ready.
Susan Glairon is a freelance writer who lives in Longmont, Colorado.