From Mongolia to America Part 1: A Journey of Hope Begins
February 2009 Issue
|Amaglan Donid. Photos courtesy of Shebana Coelho.|
When Amaglan Donid, a 59-year-old Mongolian woman with a transtibial amputation, arrives in New Jersey, it will mark the beginning of a journey made possible by the Barr Foundation Amputee Assistance Fund (Barr Foundation), Carey Glass, CPO, LPO, FAAOP, and caring individuals in Mongolia and the United States. Over the next six weeks, Glass will evaluate, fit, and fabricate a custom prosthesis for Amaglan-a patient who lives in one of the coldest capital cities in the world, several thousand miles from the United States. Given that distance and Amaglan's limited financial resources, it is likely that Glass will never see his patient in person again after the fitting period, which makes for a situation with striking challenges.
As someone who has been closely involved in this process, it's remarkable to think that my journey with Amaglan began almost two years ago in Mongolia, a former socialist state turned democracy situated between China and Russia. I was on a Fulbright grant researching nomadic herders, who comprise about 40 percent of Mongolia's estimated three million inhabitants. I met Amaglan at a Mongolian language school in the capital city of Ulaanbaatar. A petite woman with a sharp, teasing wit, she has been teaching people to speak the Mongolian language for more than 15 years. As I studied the language, I came to regard her as both a teacher and a friend and learned more about her life.
She has never been married, has four siblings, and is originally from the countryside or "hoodoo." In 1999, when she was 49, she was in a traffic accident that resulted in extensive injuries, including the loss of her right leg. After a six-month hospital stay, she undertook what she describes as a rigorous, self-designed rehabilitation process to strengthen whatever muscles she could-all the while using crutches. In 2001, she purchased a prosthesis, the one she still wears, fabricated by a German prosthetist visiting Ulaanbaatar and manufactured by F. Gottinger Orthopädietechnik, München, Germany.
"It is a patellar-tendon-bearing supracondylar-suspension prosthesis for a below-knee amputee," Glass says. "It's used because it's inexpensive, easily adjustable, and durable."
But using the same prosthesis for six years has taken its toll. Over the course of 2007, the prosthesis had deteriorated badly and was causing Amaglan recurring pain in her residual limb. In the summer of 2008, when I returned to Mongolia, the situation was worse than the year before: her prosthetic foot had broken numerous times during the severe winter, and the pain was back. She had difficulty getting to the school, so many of our classes were held in her home. It was difficult to see her so distraught and in pain.
To try to help, I sent out letters with photographs of her leg to several international disability organizations. We had almost given up hope when a good friend, Judith Garten, forwarded an e-mail message from another friend, Joan Zinter, OTR/L, CPO, with a link to the Florida-based Barr Foundation. According to its website, the purpose of the Barr Foundation is to purchase prosthetic limbs for amputees who cannot otherwise afford them. It has worked with practitioners in the United States and other countries to provide limbs for more than 1,200 amputees worldwide.
Soon after contacting the Barr Foundation, its president, Jack Richmond, wrote to say that if Amaglan came to the United States, the Barr Foundation would cover the costs of a new, high-quality prosthesis and fitting. Richmond would arrange for Amaglan's treatment in collaboration with New Jersey-based Glass, who would fit her with a custom-fabricated prosthesis- all at no cost to her. Amaglan would be able to stay with me, about 30 minutes from Glass' office, and I would act as a translator, thanks to the language skills I had learned from her. It was wonderful news.
The next step was fundraising for her travel expenses and compiling paperwork to apply for a U.S visa. Friends and organizations in Mongolia and the United States responded generously with funds. In December 2008, the U.S. Consulate in Mongolia stamped her passport with a visa. "Odoo tengert nisne," Amaglan said at the time. "I'm so happy I'm flying."
A few weeks later, I sat down with Glass to discuss Amaglan's proposed six-week treatment. A cheerful, white-haired man who speaks with precision, Glass referred to photos of her residual limb and prosthesis and English translations of her medical records as we talked.
"Years of wearing an ill-fitting prosthesis," he says, "have resulted in what we call a bell-clapper effect, where the tibia is basically banging against the walls of the socket and the distal end. She has scarred not only the tissue but also the bone. The deep bone pain that she described is probably from the impact that she's had on the distal end of the tibia. Without seeing an x-ray, I'm guessing she's probably developed a bursa at the end and maybe even spurs. She also has abraded skin."
Glass has a two-pronged treatment plan in mind. "The first part is going to be evaluation, seeing what we have to do to prepare the stump, and then we'll cast her leg so that we can make the first check socket. In the interim, we'll use mineral-gel liners and other types of socks to shape her and get the scar tissue to soften and heal itself."
In choosing a prosthesis, Glass will take into account Amaglan's high activity level and the terrain in Ulaanbaatar, which includes uneven and broken pavements that become icy hazards in the winter, and the grassy hills and steppes of the nearby countryside where she spends her summers. He favors using a dynamic-response, multiaxial foot with a carbon-fiber keel and a durable urethane foot shell. "Obviously, with all of this," Glass says, "we're going to have to use durable materials, able to withstand extreme temperatures without breaking or cracking."
Durability is vital, especially given the lack of follow-up appointments. "Since it's highly unlikely we'll see her on a yearly basis as we do other patients, we'll have to use liners that will allow her to make the adjustments on her own, and double the quantity of everything we give her," Glass says. "The difficult thing is that these liners are expensive, and we're not sure how they're going to react in her environment."
"In general," he adds, "there's a lot we don't know. And in the back of my mind, I am worried about what we might see on an x-ray. As a prosthetist, I deal mainly with outside the body, but I have to deal with what's going on inside too. Once we know for sure that there are no major problems, then we can move quickly to make her comfortable. But until she arrives, we are in the dark."
"I'll be at peace with whatever happens," Amaglan says as she prepares for her long journey to the United States. "You know, I was born in a place of mountains, rivers, and steppe. And because of this, I feel I have fortitude like a rock, adaptability like a river, and an openness as wide as the eternal steppe."
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 part 2 of this three-part series in the April 2009 edition of The O&P EDGE.