From Mongolia to America, Part 2

The Journey Continues Amaglan Donid prepared with great care for her journey from Mongolia to the United States. The 59-year-old Mongolian language teacher with a transtibial amputation had been struggling for more than six years with an ill-fitting prosthesis that was causing her chronic pain. But thanks to The Barr Foundation Amputee Assistance Fund (Barr Foundation), Carey Glass, CPO, LPO, FAAOP, and caring individuals in Mongolia and the United States, she would soon be receiving a new, custom-fitted prosthesis at no cost to her. Amaglan packed her best clothes, she says, "because I may be the only Mongolian that people in New Jersey meet, and I must make a good impression." She packed a few souvenirs and gifts because "I want to share stories from our ancient country that is also a modern democracy." But most of all, she prepared her mind, "because I will be in America for five weeks; I am sure that I am going to be surprised, and I need to ready my mind for it." At his offices in North Brunswick, New Jersey, Glass had been preparing as well. Both he and Barr Foundation President Jack Richmond had been working for weeks to secure donated materials for her prosthesis. Many generous organizations responded: Ohio Willow Wood, Mt. Sterling, Ohio, donated the foot and ankle; Fillauer LLC, Chattanooga, Tennessee, donated fabrication supplies and alignment components; Knit Rite, Kansas City, Kansas, provided the prosthetic socks; and Juzo USA, Cuyahoga Falls, Ohio, provided suspension sleeves. Glass had seen photos of Amaglan's old prosthesis and her residual limb, but he was also preparing himself for surprises when they met in person. On January 12, Amaglan arrived at his office for the first time. I accompanied her as a translator—Amaglan was my Mongolian-language teacher. We had met in 2007 while I was in Mongolia on a Fulbright research grant. That's when I had learned of the 1999 traffic accident in which she lost her right leg and of her subsequent difficulties with her prosthesis—how it kept breaking and caused severe pain that had affected her health and her income. On that first visit to Glass' office, he was struck by the scarring on Amaglan's residual limb. "There's a great deal of redness and calluses, more than I had seen in the photos," he said. He gave Amaglan gel socks and nylon socks that would, over the next few weeks, help heal the tissue. "We'll also make adjustments to her old prosthesis," he said, "so she's more comfortable in it while we create the new one." Her old prosthesis was a basic patellar-tendon-bearing supracondylar-suspension device. Glass noted that the prosthetic socket's shape did not fit "because years ago, at the time of the fitting, her residual stump was probably much fuller. Now, distally, she has no soft tissue. Basically, she changed, the prosthesis didn't, and that's why she needs a new one." Glass evaluates the fit of Amaglan's socket. Photographs courtesy of Shebana Coelho. As Amaglan walked around his offices, he also remarked on her gait. "Because her residual limb is so short, she has been walking with her knee bent. In essence, she's been holding onto the prosthesis, almost like hooking her stump inside so it doesn't come off. I suspect she's been doing this ever since she got the prosthesis. In the beginning, it was too tight, so she was trying to stay out of it, and now it's much too loose and she's hooking to stay into it. So she has had no distal contact. She has had a space shaped almost like a rectangle, which her stump is not. What we have to do is make sure that the shape we create has a relief. This way, the bone doesn't rub in that area and she is held properly. When she walks, she shouldn't feel that pressure on the distal end." He then took her cast and measurements to make a check socket for which she would return the following week. After an initial burst of animation, Amaglan was quiet during the session. Perhaps because she sensed the rapid changes ahead, her mind was racing to make sense of it all. "I couldn't find the words," she told me later. "But it's okay. I trust the process. I trust Mr. Glass." At the next appointment, Glass had prepared a check socket without an insert. Using a wedge, he had her stand on the socket to evaluate the proper prosthetic fit and ensure there were no pressure areas that would cause problems. This time, Amaglan found the words for her thoughts. "It feels tight," she said, "especially at the back of the leg." "I understand," Glass said, "And I'll relieve some of the pressure, loosen it slightly. But most of what you're feeling is what we call total contact. You haven't had total contact because you've been adding so many socks to make the old socket fit. It's like going from pillows to a hard bed. But you need a proper fit, and the proper fit is that you should be able to be in a prosthesis and not have to think about how to hold onto it." Amaglan listened thoughtfully and nodded. As I watched her, I realized neither of us had considered the emotional aspect of the process. We had both been overwhelmed at the generosity of Glass and the Barr Foundation, which we had found after sending out many letters, and in our excitement, we hadn't really talked about the psychological effect on Amaglan. But how could there not be one? She had lived with the old prosthesis for more than six years, and any change, even one for the better, was bound to register as drastic and require processing. Amaglan tests her new prosthesis and gets used to the feeling of "total contact." On the next visit, Glass conducted a dynamic fitting for her new prosthesis: a supracondylar-suspended endoskeletal prosthesis with titanium adaptors, an aluminum pylon system, and a dynamic-response foot. "The next phase is for her to get used to the prosthesis," he said, "and to the feeling of actual total contact. That's why we are going to give her this prosthesis and have her use it for a few days before we finish it." Over the next week, Amaglan diligently wore the new prosthesis. She took walks along the paths of our housing development. She scribbled down notes, asked how she looked as she walked, and walked some more. At Amaglan's fourth appointment, almost a month after her arrival, Glass watched as she walked through his office, then made necessary adjustments to the alignment. "I think that should do it," he said. "It's a successful dynamic alignment. And look how improved her skin is. She's really adapted nicely to the new prosthetic socks and nylons. All that blood redness is gone, the callus is gone. Now she has a nice clean look to her residual limb." Meanwhile, Amaglan had other concerns. She was staring at herself, moving forward and backward in front of a mirror. "My hips are moving a lot!" she said, puzzled. "That is what they are supposed to be doing," Glass said patiently. "But you're not used to doing that; you're used to staying ramrod straight." "The thing is," he turned to me, "she's never been level. Her prosthetic side was either too high or too low depending on when she was wearing it. Over a ten-year period, you start out one way and you end up another way and you think that's normal." When I explained this to Amaglan, she began to smile. "With hips like this," she said slowly, "even when I don't move my feet, I look like I am dancing." We all began laughing, and she joined in. The next afternoon, she was presented with the final prosthesis, finished with a polyethylene foam cosmetic cover molded over the socket, the foot, and the pylon. She also received two Pe-Lite inserts, a nylon, a three-ply sock, a suspension sleeve for security, and extras of everything. The complete prosthesis weighed approximately 2.8 lb., including her shoe. She tried it on again, her face somber, breaking into sudden smiles and sudden frowns. It felt like we were all on stage, but no one knew whether to applaud or hold their breath. "The strangest thing for her," Glass said, "will be breaking the routine of short-stepping.... Now she can take a full step and use the entire prosthetic foot. She can also be on her feet for much longer periods of time. And she's not going to have pains like the ones that she arrived with. Now that the prosthesis fits properly, she's not bouncing around at the bottom of the socket, so she's comfortable. I think she's already done beautifully, and I think she will just continue to do beautifully." He smiled at Amaglan who smiled back, her eyes wet. "I know she may not be able to come again for a checkup in a year like our other patients," Glass said, "but maybe we can arrange to see her via a webcam." "We'll try," I said. We all shook hands. Amaglan gave heartfelt thanks in Mongolian and English to Glass and his staff, including Michael Frost, MA, CPed; Dee Maggiore; Alison Seltzer; and Hillary Glass. "Well," I said, to Amaglan as we sat in the car, "how do you feel?" "Happy of course," she said, "and amazed, grateful. But I thought this was the end, and it's not. I'm wondering what it'll be like when I return to Mongolia." She looked out the window, her eyes soft. "It really feels less like an end and more like a beginning." Shebana Coelho is a writer and documentary producer. For more information about her work, visit nomadicencounters.blogspot.com For more information about the Barr Foundation, visit www.oandp.com/resources/organizations/barr/ Editor's note: Look for the conclusion of this three-part series in the June 2009 edition of The O&P EDGE. To read part 1, visit the February issue of The O&P EDGE.

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