The Health & Lifestyle Magazine for Amputees Who Want to Live More Fully
THE AMPUTEE ENERGY CRISIS 12 BETTER PROSTHETIC SOLUTIONS 16 MY ENEMY, MY MIND 22
How members of the Sierra Leone Single Leg Amputee Sports Club (and others) are...
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The Health & Lifestyle Magazine for Amputees Who Want to Live More Fully
Volume 1, Issue 1 Amp It Up! c/o Eureka Custom Media, LLC 1916 Redbud Valley Drive Maryville, TN 37801 865 233-8711 rick@EurekaCustomMedia.com
From the Editor
publisher Eureka Custom Media, LLC
elcome to the first issue of Amp It Up! - the health & lifestyle magazine for amputees who want to live more fully. We are very excited about producing this publication, and we hope that you will enjoy and benefit from it. We chose the name Amp It Up! for many reasons. Having been an editor for a national amputee magazine for more than 10 years, I have met, known, interviewed and written about numerous people who have lost limbs - from single-limb amputees to quadruple amputees. In this time, I learned one important thing that all people with limb loss have in common. Once you’ve lost a limb, no matter at what level, just living your life and doing what you’ve always done is going to take more effort - it’s going to require that you “amp up your game” a bit. To live beyond your former life, which is what many amputees choose to do, you’re going to have to “amp it up” a lot. Another important thing I learned is that people often have the ability, when put in difficult circumstances, to amp it up to a whole new level. There seems to be something dormant inside people that, once provoked, propels them to be more than they ever believed they could be. It’s as if they rebel against adversity and say, “Just wait. I’ll show you. Don’t tell me what I can’t do.” These are the type of people Amp It Up! is for. If you’re one of these people - even if you just want to amp it up enough to get out of bed in the morning, to make dinner,
Editor-in-Chief Director of Communications Rick Bowers rick@EurekaCustomMedia.com
or to get into your wheelchair and roll around the house - Amp It Up! is for you. Within the pages of Amp It Up!, you’ll find stories about people who want to participate in extreme activities after their amputation and others who just want to live their daily lives more fully. You’ll find information and encouragement to help you reach your basic goals or to do more than you ever thought you were capable of. You’ll find information and resources to support you in your time of struggle, and you’ll find peer support. And, later, perhaps after you’ve reached or exceeded your own goals, you’ll want to help others amp up their lives as well. In this issue, you’ll read about several amputees who have amped it up at work, at school, in sports, in their relationships, etc.; you’ll learn about the amputee energy crisis and how to overcome it; you’ll learn about prosthetic devices and ways to obtain the one(s) you need to help you maximize your potential; and you‘ll discover some resources for helping you deal with the de-amping effect of your mind. Take a look at the word “amp” on our cover and notice the negative space in the letters “a” and “p.” It is shaped like a drop of fluid. This drop represents the blood, sweat and tears that all amputees go through on the road to healing and excellence. We could not think of a more appropriate symbol for amputees. Onward and upward!
Creative Director Michael Shannon michael@EurekaCustomMedia.com
Director of Advertising & Sponsorships Kim Phillips kim@EurekaCustomMedia.com Editorial Advisory Board Jamey French Molly French Patty Parrish Friend Jim Haag Tammie Higginbotham M. Jason Highsmith, DPT, CP Dr. Mark Hinkes, DPM Brian J. Johnston Jason T. Kahle, CPO Shauna Mote John Rheinstein, CP, FAAOP Jennifer Latham Robinson Neal Seigfried Stella Sieber
Amp It Up! is published 9 times a year by Eureka Custom Media, LLC. Copyright © 2012 Eureka Custom Media, LLC. All rights reserved. This publication may not be reproduced in whole or in part, in any fashion, electronically or otherwise, without the written permission of Eureka Custom Media. Information in this publication is the responsibility of the producers of the content and does not always reflect Eureka Custom Media’s views. Such information is provided for educational purposes and is not intended as a substitute for professional medical advice. For specific medical advice related to your situation, please seek the advice of a professional healthcare provider. The inclusion of advertisements and articles in this publication should not be construed as endorsement of any product, service, device or company by Eureka Custom Media.
March/April 2012 Amp it up! magazine
features 05 06 11 12 16 22
Sports & Recreation: OPAF Cover story: Amping it up Spotlight on nonprofits: Limbs for Life The energy cost of being an amputee Tools for living My enemy, my mind
regular From the editor 03 Books that matter 11 Upcoming events 27
Cover Photo by Johnny Vong www.johnnyvong.com
Sports & Recreation
OPAF & The First Clinics offers free adaptive recreation opportunities for “regular Joes and Janes”
Photos courtesy of OPAF & The First Clinics
id you like to play tennis, swim, kayak or participate in some other recreational activity before you became an amputee? Have you been afraid or ashamed to try it again in public since your limb loss? Or, even if you haven’t participated before, would you like to try a new recreational activity just for fun or for health reasons? If so, check out OPAF & The First Clinics. This nonprofit program provides adaptive recreational sports opportunities and clinics across the country for people with physical challenges. Current First Clinics being hosted include tennis, swimming, scuba, dance, kayaking, rock climbing, therapeutic horsemanship and golf. “The word ‘First’ in our name indicates that this may be the ‘first’ time that a participant is trying an activity or the ‘first’ time that they are attempting any recreation post surgery, illness or injury,” says Robin Burton, executive director. “Our events give participants a safe, supportive environment to try new things, as well as the opportunity to meet, network and bond with others who are differently abled.” Tammie Higginbotham, a below-knee amputee who has participated in some of these events, says that they are a great experience. “I was a demo rider at OPAF & The First Clinics’ inaugural McKeever’s First Ride in Atlanta. Being an avid horse rider all of my life, I knew the feelings of the ‘firsttimers’ as they would gently stroke the horse’s head or neck and look into those big, brown, trusting eyes. Once they were in the saddle, their faces would light up as they felt the strength of the horse, the height of the horse, and realized that they were moving about as freely as they used to. I have seen how it changes the faces of amputees when they ride for the first time or ride again.” She also saw the amazing effects on the youngsters
Upcoming First Clinics April 21 McKeever’s First Ride
Gwinnet County Fairgrounds, Atlanta, Georgia May 7 First Swing Learn to Golf for Iowa Veterans
Derby Grange Golf Center, Dubuque, Iowa (Contact OPAF to confirm event has not been cancelled or rescheduled.) Visit www.opfund.org/ opaf_calendar.asp to learn about many more upcoming clinics.
at a First Volley event. “To see kids arrive at the event - some hesitant, some eager - and watch their faces light up as they began to realize that they were playing tennis was fantastic,” she says. “It was totally awesome seeing a young lady with no arms playing tennis. Gotta respect that girl! The huge smiles and excitement that filled the air at this event was truly heartwarming.” If you’d like to participate in any of these sports, contact OPAF & The First Clinics. As Robin Burton sometimes says, “You can’t beat free.” For more information and a complete list of upcoming events, please visit www.opfund.org, e-mail firstname.lastname@example.org, or call 319 235-4318. For more Sports & Recreation Resources, visit www.AmputeeNews.com/resources/sports-2 March/April 2012 Amp it up! magazine
Cover Story by Amp It Up! Staff
Amping it up
Photo credit this page: Johnny Vong www.johnnyvong.com
he players, dressed in various brightly colored shirts and shorts and kicking up dirt, move quickly, deliberately, down the soccer field, driving forcefully toward the goal. In the extreme competitiveness of the game, they fall, get knocked down, and sometimes even soar above the competition. The single-armed goalies and single-legged players on their crude crutches, rather than detracting from the game and its spirit, only serve to make it more exciting. It is soccer, perhaps at its most grueling and fascinating. The competition on the field is fierce, but the battle many of these same players face within themselves and off the field is even more so. These players are members of the Sierra Leone Single Leg Amputee Sports Club (SLASC) who were chosen for their country’s national soccer team. Many of them have lived through a terrifying nightmare - a nightmare that left them as amputees and as men with deep emotional scars. As children of 10-13 when they were caught up in their nation’s civil war more than 10 years ago, some of them had their legs or arms chopped off by rebel soldiers who were terrorizing the population. Since that time, they have lived through poverty, prejudice and an unfortunate stigma against people with disabilities. As they struggled with these difficulties, many of these players thought that their lives were over and that there was no reason to live. Jabaty, who was 15 when rebels chopped off his hand, wanted to kill himself. Bornor struggled to feed his five children as a single father. Another used to beg in the streets. Then, they found amputee soccer, and excelling at the game gave them something to live for - a new goal to work toward. And that was just the beginning. Today, they have raised the bar much higher.
Going for the goal
Against devastating odds, they now want to participate in and win the 2012 Amputee Football (Soccer) World Cup championship in Iran. These amazing men, who were once pitied and mocked, are now cheered as national heroes. Nothing - not ragged clothes, substandard prosthetic devices, homemade crutches, extreme poverty, broken relationships or society’s mocking - has been able to stop them from excelling once they decided to do so. “[Amputee soccer] restores their pride and dignity. It lets them stand on their own and makes them men,” says Ngardy Conteh, co-director and editor of the upcoming documentary Leone Stars, which follows these young men as they amp up their lives and refuse to give up their dreams regardless of any adversity. Today, says Allan Tong, co-director and writer of the film, “they leap and kick and run - and soar like one-legged men flying!” Although these young men have lost their hands or feet, the unwavering pursuit of their goals has given them something else - something that even people with all of their limbs might never have. It has given them mighty wings with which to fly. For more information about the film Leone Stars, which the directors hope to premiere in 2013, visit www.leonestars.blogspot.com or watch the trailer at goo.gl/whBfP
“This one step - choosing a goal and sticking to it - changes everything.” — Scott Reed
go back to school “anytime soon,” Maria rejected that assessment. “I returned to school that fall,” she says, “and I changed my major from physical therapy to occupational therapy.” Maria, now 44, has come a long way since those days and is now the director of occupational therapy at the J.D. McCarty Center for Children with Developmental Disabilities. Never forgetting the words that threatened to derail her own recovery after her legs were amputated, Maria strives to help her patients maintain a positive outlook. “Understanding the reality of a situation is one thing,” she says, “but smashing someone’s drive to try is unacceptable.”
The story of these amazing soccer players is an apt metaphor for the lives of many amputees who decide to amp up their lives rather than sit on the sidelines. Finding a goal that you can work toward is an important turning point in many amputees’ lives. It could be a sports goal; a goal to marry or have children; a goal to be a better spouse, parent or child; a goal to complete your education or get a job; or a goal to simply improve your daily life. Whatever it is, the important thing is that it gives you something to strive toward. Then, as you start working to achieve this goal, you too might fall down and get knocked down. You too might have to kick up some dirt or might face discrimination and jeers. However, if you want it badly enough and work hard enough to reach your goal, you too, like the members of the Sierra Leone soccer team, might, through your tears of struggle and with the help of a dedicated team, have the opportunity to soar. Amputees Maria Greenfield and Jothy Rosenberg are great examples of this metaphor becoming reality.
A winning recipe: goals + stubbornness Probably one of the last things you have on your mind as a 19-year-old is wrecking your beloved Ford Mustang in the rain, getting out to check the damage, and being hit by another car. When that happened to Maria Greenfield nearly 25 years ago on February 27, 1987, she didn’t know what hit her. In fact, she still doesn’t remember the two hours before or two weeks after the accident that cost her both of her legs and nearly her life. At the time, she was working toward a degree in physical therapy at the University of Oklahoma. Almost dying and spending nearly three months in the hospital certainly didn’t fit into her plans, but she had a great attitude that would make all of the difference in her recovery and future life. When an occupational therapist who had only met her twice told her that she shouldn’t expect to
Getting back to life
Positive and happy by nature, Maria had little difficulty accepting her limb loss and did fine physically and emotionally, which she attributes to “great support from family and friends, having a great sense of humor, and being in good physical shape.” She mainly just wanted to get back to life and figure out how she was going to accomplish her goals in the future, such as going back to school, driving a stick shift, pursuing a career, getting married and having a family - all of which she has since accomplished. “It would have been easy to sit on the couch and be served for the rest of my life,” she says, “but such a life would have been very boring.” Having goals to work toward after amputation is very important, she argues.
Obstacles along the way
Unfortunately, the low level of prosthetic devices available when Maria first lost her legs held her back a little in the beginning. It was improved prosthetics, her husband, whom she married in 1991, and her two children that have really helped her take her life to the next level, she says. She believes that access to the appropriate prosthetic devices has been very important to enabling her to do whatever she wants to do. (See related story March/April 2012 Amp it up! magazine
about acquiring prosthetic devices on pages 16-19.) “I am very fortunate that I have medical insurance through my job, but I have sometimes had to fight to make them pay for even a portion of a set of legs,” Maria says. “I can be very stubborn when it comes to someone telling me that they won’t pay for something when I believe that they just don’t understand.” So far, however, she has been able to get the prosthetic devices she needs for daily life and special activities, even though her share of the cost even after insurance pays its share is quite expensive. Every two years, her new legs cost approximately $100,000, she says. “I truly need these devices, and I truly use them,” she asserts. “I don’t sit on the couch. I wear them an average of 16 hours a day seven days a week!”
Photo credit: Brightroom Photography
Kicking it up a level
In 1997, Maria was awarded National Therapist of the Year by AMBUCS and was given a free cruise. “My husband and I decided to become scuba-certified with the money we saved on the cruise,” she says. “I felt that I needed water legs or swim legs to accomplish this goal so I found a prosthetist who knew of an ankle that locked in a kicking position for swimming and a neutral position for walking.” When Maria signed up for that first scuba class, she didn’t mention that she was a bilateral leg amputee. Fortunately, when the teacher found out, she allowed her to stay in the class, and Maria earned her certification. Today, she is a scuba instructor and an International Handicapped Scuba Association instructor. Maria also snow skis and hikes and says that she has been able to achieve a lot of her goals through trial and error, which means falling many times, getting back up, and trying other ways to do things. This is where being persistent and stubborn pays off, says Maria. “Keep on keeping on!” she advises others. “Don’t take no for an answer, and don’t be afraid to try new things.” After “falling off a ‘horse’” 25 years ago, Maria got right back on another one. She immediately purchased another Mustang after her discharge from the hospital and transferred the engine from her wrecked one into the new one. It’s as if she has said over and over - to her Mustang, to her occupational therapist, to her scuba instructor, and to every other potential obstacle in the way of her goals - “Don’t tell me what I can’t do! Don’t you dare!”
Amp it up! magazine March/April 2012
Who says I can’t! When it comes to being stubborn, Jothy Rosenberg is perhaps in a class all alone. He’s addicted to challenge and overcoming challenge. It’s what makes him tick and succeed. If you challenge him, just be sure to get out of the way. When Jothy was just 16, he lost his right leg to bone cancer - an experience that has impacted his entire life. “In that type of situation,” Jothy says, “you can either give up or you can fight back and try to figure this new challenge out. I decided to try to make the best of it even though I had no idea how I would be able to do the things that were really important to me.” As he began trying to live his life again, Jothy faced many difficulties. “At first,” he says, “I had no choice but to just face each challenge as it came because they had to do with survival like learning how to walk on crutches, to balance on one leg, etc. But once I started to build back my self-confidence, which had initially vanished, I started to realize I could do a lot more than anyone or I thought I could - and that became energizing. When you face challenges and overcome them, it can actually become addictive, and, to some extent, that is what happened with me.” The amputation was done in January, and, in March, Jothy pushed his parents to take him out to try snow skiing again. “I had to know if it was possible,” Jothy says. “Outriggers had not yet been invented, and, using regular poles, I would turn, fall, get up, turn and fall again and again. My stump was not yet healed, and my parents were freaking out. They assumed that the day was a disaster, but I was hopeful and saw it as something I simply had to work really hard at. After a while, I got really good at it, and that was the most important part of my recovery because of the confidence it instilled. At some point, I became good enough to get literal double takes from two-leggers. It is hard to express how powerful that is. The positive response I got from getting good at sports was addictive and helped keep me at it.” Unfortunately, a few years later when he was 19, Jothy’s bone cancer spread to one of his lungs, and he had to have it removed. Chemotherapy was brand new, and in the past this was a death sentence. The prognosis was grim. He was expected to die. “Because they told me I had zero chance of survival, I decided to become a ski bum and finish my
life doing something I loved,” he says. “I drove to Utah and skied 100 days straight, and then I realized I wasn’t dead after all.”
Success breeds success
Surviving cancer against all odds, Jothy then continued to succeed in other things, and, as he did, he began to try to do more. He married and had two children, earned a Ph.D. in computer science, taught at Duke University, and started eight high-tech companies. He wrote four books. He has been a speaker at conferences, corporate meetings, universities, schools, and other events. He has appeared on NBC’s “The Today Show” and, recently, he debuted his own reality TV series, “Who Says I Can’t,” which features three amazing people in each episode who have been knocked down but who have used sports to become stronger and better than they were before. Jothy has also become involved in extreme sports over the years, swimming from Alcatraz to San Francisco, skiing black diamonds, water skiing barefooted, riding a bike from Boston to New York for charity, and participating in ride-a-thons to raise money for the Dana-Farber Cancer Institute. And in his new TV series, he will try whatever athletic challenges that his guests are participating in. After telling the viewers “Who says I can’t!” Jothy will give mountain biking, swimming, mountain climbing or whatever his guest is doing a shot. “I truly believe that sports are a magic thing for many people to use to regain their equilibrium after some sort of setback - even if they are not athletes,” he says. “This is because our bodies are very good at adapting to something you work them hard at and spend a lot of focused time on. The magic comes from the satisfaction we gain from getting good at something. And once we get good at it, our self-confidence starts to rise and with it our self-esteem. If we can regain our self-esteem doing a sport, it’s back, and it’s with us for everything else we do.” Eventually, although it wasn’t his original goal, Jothy’s successes became an inspiration to others as well. “That was a total accident,” he says, “but once it happened, it is what motivated me to write my book Who Says I Can’t. Then the rave reviews for the book made me want to go further and tell other people’s stories - and that led me to create the TV show.”
Keep on trying But even though Jothy has had numerous successes, he’ll also tell you that he has fallen and been knocked down over the years. “Of the eight startups I got funded and built teams for, only two actually had really good outcomes,” he says, “although those two sold for more than $100 million. My book, Who Says I Can’t, has done well, but it still has not sold at the level where it reaches even a fraction of the people it could really help so that has actually felt at times like a setback.” Still, Jothy simply considers these setbacks as challenges to be ultimately conquered and sets new goals for overcoming them. “You adapt, you change course, or you simply try again,” he says. “That is the story of my life. I really do live by the mantra of ‘Who Says I Can’t’ so a setback feels like ‘Can’t’ and it really motivates me.” The motto “Just Keep Trying” has also worked well for Jothy. “A case in point,” he says, “is getting my book published. I knew that to get a big publisher interested, I needed an agent. So I researched and found 58 that handled memoirs and were still taking on new clients. Each had a very different requirement for a query. I did exactly what each of the 58 specified. Then, sometime later, I got exactly 58 rejections. So I was set back on my heels and took some time to think what the next step should be. Eventually, I realized I had a friend who was an author and who might have an agent. He made the introduction, and the agent took me on and went after the big house publishers really hard for a year. No dice, so I was knocked on my heels again. I decided self-publishing was better than nothing so I researched it and found a company I wanted to work with. After selling 3,000 copies that way, a traditional publisher is now interested, and we are going to publish a 2nd edition.” The members of the SLASC, Maria Greenfield, Jothy Rosenberg and many other amputees who have “amped up” their lives have many things in common. One is setting goals and striving toward them, and another is perseverance. “Perseverance really pays off,” says Jothy. “I just keep on trying and refuse to give up.” Now you know the secret. Who says you can’t! For more information about Jothy or to purchase his book, Who Says I Can’t, visit www.whosaysicant.org/ shop. March/April 2012 Amp it up! magazine
8 tips for “Amping Up” your own life
Amp it up! magazine March/April 2012
Believe in your continued potential after amputation. Limb loss does not have to prevent you from going to school, having a job, marrying, having children, participating in sports, and enjoying a full life.
Choose a goal to work toward. As important as this is, the good thing about it is that anybody can do it. It takes no special talent or physical prowess to set a goal. Neal Seigfried, an amputee and peer visitor for other amputees, tells a funny story that illustrates this point. “Most new amputees I visit are amazed that so much can be done while using a prosthesis,” he says. “However, one day, I was visiting three older gents in a rehab facility. Two were 87 and one was 82. I was showing them how the prosthetic leg works and what holds it on. I was telling them what all could be done even though they were now amputees. The two oldest guys stopped me, and one said, ‘All I want to be able to do is walk. Nothing more at my age, just walk.’ I nearly cracked up as I have a certain program that I try to cover while doing these visits. I never considered that an 87-year-old couldn’t care less about running or climbing.” Even though it doesn’t seem like a huge goal for most people, being able to walk was certainly a goal for these gentlemen. Setting this goal then gave them something to work toward. Once you set your goals, making progress toward them or achieving them will build your self-esteem and fuel you on toward greater successes.
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Become involved with a group that is doing something worthwhile. Accept the support of family, friends and others. Keep trying, and don’t give up or take no for an answer. Persist - and perhaps even be a little stubborn. Don’t let anything stand in the way of achieving your goals. Know that you don’t have to have everything to succeed, but realize that acquiring the tools you need, like the right prosthetic devices, etc., can give you a greater ability to maximize your potential. (See related article on page 16) When/if you fall down or get knocked down, dust yourself off and look for alternate ways to accomplish your goals. Experiment, and learn from things that don‘t work. “Fall seven times, stand up eight,” advises a Japanese proverb. If you fall over and over, but stand up the last time, you will win. Focus intensely on your goal, and move toward it step by step (or wheel turn by wheel turn). Break down your large overwhelming tasks into smaller, more manageable tasks and take them on one at a time. “Obstacles,” said Hannah More, “are those frightful things you see when you take your eyes off the goal.” For more articles about amputees accomplishing their goals, visit amputeenews.com.
Spotlight on Nonprofits
Books that matter Keep the Legs You Stand On
Photo of Josh Gibson: Courtesy of Limbs for Life Foundation
Limbs for Life Foundation changes lives through prosthetic assistance J osh Gibson was born without a femur bone, necessitating the amputation of both his legs by the time he was 2 years old. “I never knew what it was like to have my legs so it doesn’t and never has felt like I have a disability,” Josh says. With appropriate prosthetic care, amputees like Josh can feel hopeful and empowered instead of disabled. Though Josh has always played sports and was involved in all of the activities the other kids he knew took part in, he sometimes felt unable to achieve the same performance levels as other kids due to dealing with the challenges of wearing prosthetic devices. Support from family, friends and his high school baseball coach to continue pressing onward encouraged him. The support of those who care for them, along with quality prosthetic care, is of utmost importance to amputees. As an adult, Josh is now able to enjoy all of his favorite activities, such as fishing, golfing and noodling. He is also able to attend and take an active role at his children’s sporting events and spend quality time with his family. Unfortunately, if
by Dr. Mark Hinkes, DPM In this book, Dr. Hinkes discusses the risks of amputation in people with diabetes and ways to prevent it. This book is especially relevant to amputees who’ve already lost one foot or leg to diabetes and are especially at risk for losing their remaining foot or leg unless they take steps to protect it now. Dr. Hinkes’ expert advice could help amputee patients save their remaining limb and perhaps their life. For more information about this book or to purchase it, visit amputationpreventionpartners. com.
Sara is ten years old. She tells the story of how her grown up friend is very sick and medicines don’t seem to help her too much. Her foot is bandaged and she can’t get around without the help of a wheelchair and crutches. Sara is saddened to see her friend in pain. Her friend must go to the hospital to have a special operation, called and amputation to cure her illness. This is no ordinary or easy operation and though her life will be forever changed, she will inspire a positive way of thinking in those around her with the greatest gifts one can have- laughter and friendship. A note from the author: Please use this book as a tool to engage children in a discussion about what can happen during illness, treatment and recovery. Sometimes the most difficult medical choices can bring about the healing of not only one’s body but one’s inner self as well. One’s life can be just a fulfilling after an amputation as it was before and a good sense of humor IS the best medicine of all. My very good friend handled her own amputation in this way and I hope that her story will inspire those who may experience this life changing situation.
he didn’t have access to fully functioning prosthetic limbs, doing these things he loves would not be possible. Limbs for Life, a 501(c)(3) not-for-profit organization that provides prosthetic devices for amputees who cannot otherwise afford them, has helped Josh with his prosthetic care and strives to help other qualifying amputees as well. “We are overjoyed that due to quality prosthetic care, a strong family man is able to be all he wants to be and share in all the things he desires to be a part of for his family,” says Limbs for Life. “We strive to create Miracles in Motion: Individuals and families transformed by the art and science of modern prosthetics.” For more information, visit www.limbsforlife.org.
Boo-Boo’s New Leg: A True Story of Illness, Acceptance, and Healing
by Mary Garcia This beautifully illustrated children’s book gives readers, young and old, the opportunity to learn about amputation and amputees. When her older friend has an amputation, 10-year-old Sara learns valuable lessons, which she passes on to the reader. For more information about this book or to purchase it, visit marygarciabooks.com or booboosnewleg.wordpress.com.
Stand Up: I Lost My Leg To Cancer Not My Dream
by Scott Odom The founder of AMP1 Stand Up Amputee Basketball tells his amazing story of overcoming cancer and pursuing his dream. For more information about AMP1 Stand Up Amputee Basketball or to purchase the book, visit amp1basketball.com.
March/April 2012 Amp it up! magazine
Health Notes By Jason T. Kahle, CPO, FAAOP, and M. Jason Highsmith, CP, DPT, FAAOP
The energy cost of be and how to overcome it
ave you ever wondered why you feel so exhausted after just walking out to the mailbox to pick up your mail? Before you lost your leg and started wearing a prosthesis, you wouldn’t have noticed the energy it took. Now, it’s as if you ran a marathon. Your prosthesis is made out of the latest materials and cost tens of thousands of dollars. It’s lightweight and shouldn’t tax your energy so much so why are you getting so tired so easily? And, more importantly, how can you overcome this problem and get your life back to “normal”? To answer these questions, we must first explain some basics about energy consumption by the human body. Energy is needed for maintenance, growth, everyday activities and exercise. The amount of energy required by your body depends on the intensity and duration of the exercise or activity that you are performing. For an amputee, everyday walking and activities of daily living can seem like exercises!
How the body consumes energy Your body consumes energy in three ways:
• Physiologically • Through Activities of Daily Living (ADLs) • Through deviations from normality like walking with a prosthesis
Physiological energy consumption includes the energy you use through breathing, the beating of your heart, the digestion of food, and other mostly involuntary actions that your body engages in to survive. ADLs include walking, eating, standing, sitting, exercising, and all of the other activities you engage in during the day to maintain your life. Deviations from normal-functioning physiology include things you do to ambulate differently. These might include activities like walking with a cane, a crutch, a walker and/or a prosthetic device. Using these devices will cause your body to use more energy than you would if you were walking “normally” without them.
USF researchers M. Jason Highsmith (second from left) and Larry Mengelkoch prepare an amputee to test his oxygen consumption.
Amp it up! magazine March/April 2012
Your body has two energy systems: the aerobic and the anaerobic. The aerobic energy system is usually the first to be used when you are active and your body demands more energy. At this time, your muscles demand more oxygen, causing you to breathe harder and your heart to beat faster. When the oxygen needs of your body can no longer be met, your body switches to its anaerobic
being an amputee energy system, which produces energy without the use of oxygen. Unfortunately, the anaerobic system can only produce a small fraction of the amount of energy produced by the aerobic system. Although this system gives muscles a quick source of energy when needed, it is less efficient than the aerobic system and is better for immediate and strenuous efforts of short duration. Your energy can also be limited by lactic acid buildup in your muscles. This buildup causes your muscles to feel fatigued or tired, especially after you get a new prosthesis that is aligned differently or that makes your muscles work in a different way than they are used to working. Eating the right types of foods can help you reduce this buildup and help your body consume energy more efficiently.
Factors affecting energy cost
Many factors can affect the amount of energy you require for walking and performing your ADLs. They include:
• Your age and overall physical fitness. • Cause of your amputation. If you have a traumatic amputation, it is probably because of the trauma you suffered during a specific incident. If, on the other hand, you have an amputation because of peripheral vascular disease or diabetes, you might also have underlying problems with your heart, lungs, or other organs that can affect the energy you require for walking. In general, those who have lost a limb
as a result of vascular problems will use more energy and walk at a slower speed than those who have lost a limb due to trauma. • Use of an assistive device. These devices can require you to use more energy since you have to carry them and walk with an alternate gait pattern. • The fit of your prosthesis, its interface design, and its components.
Walking is a series of smooth, advanced motions through space with the goal of forward movement. Leg and arm motion is based on the need to maintain a symmetrical gait (style of walking). Your center of gravity needs to remain as “still” as possible to conserve energy. If it deviates from the norm, you will require more energy to walk. Keeping your head, arms and trunk (HAT) moving forward is the goal, and the more “still,” or “normal,” your HAT position is, the more energy you will conserve. Our bodies use several strategies to conserve energy during normal walking. When we first strike our heel on the ground, proper ankle motion improves shock absorption and minimizes the vertical rise and fall of the HAT and the forces that can cause energy consumption. As long as amputees maintain an adequate level of ankle stability after amputation, the loss of natural foot and ankle motion will not greatly affect their energy use. In other words, if you are a below-knee (BK) amputee and are well fit with an energy returning/storing foot and/or ankle unit,
March/April 2012 Amp it up! magazine
USF researchers Jason T. Kahle (right) and Larry Mengelkoch test an amputee’s oxygen consumption during running with different feet to see which one allows the amputee to perform the best.
the energy you use should be minimal. However, as the amputation level becomes higher, it will have a greater impact on energy consumption. Knee motion is also very important in minimizing the abnormal motion of the HAT and maintaining the center of gravity. Consequently, an amputation at the above-knee (AK) level substantially increases the amount of energy required to walk. A common strategy people with above-knee amputations use to conserve energy is to walk at a slower speed. Unfortunately, a hip disarticulation amputee has no hip, knee or ankle to minimize the abnormal motion of the HAT. Because these three joints work together to decrease energy consumption, amputees who are missing all of them will require significantly more energy to walk. As people lose more joints and muscles due to higher-level amputations, they also lose the normal mechanisms used for efficient walking and performance of ADLs. This means that they will use more energy for these activities and will walk at a slower speed. Data reported in the Atlas of Limb Prosthetics: Surgical, Prosthetic, and Rehabilitation Principles shows that a below-knee amputee uses approximately 14% more oxygen (energy) and walks close to a normal speed. However, an above-knee amputee uses a considerably higher amount of oxygen and walks at a significantly slower speed. Some reports state that an above-knee amputee can use up to 65% more oxygen and walk more than 50% slower. In short, as the level of amputation gets higher, more energy is needed, and the amputee will walk slower to preserve energy. The same is true of bilateral amputees. When an amputee has lost parts of both legs, he or she will use more energy and walk slower.
Length of the residual limb and socket fit
The length of your residual limb also plays a large role in your energy consumption. The longer your residual limb, the more control you will have over your prosthesis. The more control you have over your prosthesis, the more you will be able to minimize your gait deviations and maintain the proper center of gravity and HAT position. In short, the longer your residual limb is, the less energy you will consume. Therefore, if amputation is required, all options should be considered to preserve as much of your anatomy as possible. Additionally, a well-fit socket will help you better control your body, center of gravity and HAT position.
Adding weights to your body will obviously require you to consume more energy. The closer to your center of gravity those weights are, however, the less energy you will need to maintain your center of gravity and
Amp it up! magazine March/April 2012
walk normally. Conversely, the farther those weights are from your center of gravity, the more energy you will require to walk. A small amount of weight placed on your foot could have 100 times the effect on your energy consumption as the same amount of weight placed near your center of gravity. There is more acceleration of a foot than the HAT during walking, and it is more difficult to control weight the farther it is from your body. The weight of your prosthesis and the suspension (the means in which the prosthesis holds on to your body) can play a large role in the amount of energy required to walk with your prosthesis. Minimizing the weight of your prosthesis is therefore a very important strategy for helping you conserve more energy. The weight of your prosthesis is just part of the equation, however. The No. 1 thing you can do as an amputee to preserve your energy is to watch your weight. Our skinny patients walk better and faster than our obese ones. It is easier for people who are slim to control their HAT and their center of gravity. In addition, supporting the weight in your socket is easier when you are slim. The lighter you are, the less energy you will need to walk.
Assistive devices: energy cost versus safety
Walking with a cane, a crutch, crutches, or a walker will have serious consequences for your energy consumption. Walking with an assistive device requires the lifting of an object and additional upper-limb energy. In addition, using such a device disrupts normal swinging of the arms and the torso, which will require your body to work harder. On the other hand, using an assistive device can be crucial to keeping you safe. A fall can cause a loss of confidence in your prosthesis or, even worse, serious physical injury or death. You should therefore consult your prosthetist, therapist, and/or your physician for advice about using or discontinuing the use of an assistive device.
What else can I do?
“Normal” walking requires relatively little energy in healthy adults but can become more difficult as we age or acquire diseases like diabetes or dysvascular disease that compromise the function of the lungs and heart and affect the body’s ability to get necessary oxygen. This may be why elderly people walk slower: to preserve energy. You can improve your aerobic capacity through a physical-conditioning program that improves your lung and heart function, increases oxygen to your muscles, and builds your muscles. Unfortunately, living a sedentary lifestyle will lead to the opposite result. Three weeks of bed rest can lead to a 27% decrease in cardiac performance. In addition, from the time we are 50 years of age, we lose 2% of muscle
mass a year until we die. A physical-conditioning program is therefore crucial, especially for older adults, many of whom have associated dysvascular disease or diabetes. Such a program can help keep your energy levels where they need to be to perform your necessary ADLs. Be sure to consult your prosthetist, therapist and/or physician about a proper physical-conditioning program to ensure that it is safe and suited to your needs.
How can my prosthetist help?
Start with telling your prosthetist about your concerns. Many variables related to your prosthesis can play a major role in your energy consumption. A bad socket fit can diminish the stability and control you need to maintain your HAT position. Volume changes in your residual limb are very common and should be addressed by changing your socket to ensure an optimal fit. Misalignment of your prosthesis, including its height, is another source of energy loss. The stability of your prosthetic knee depends on where it is aligned. Sometimes, patients have to “work” at stabilizing their knee while they walk or stand. Moving the knee position and finding the right trigger point or adjusting the settings can help dramatically. If the height of the prosthesis is either too short or too long, the HAT position will certainly deviate. It is therefore important to make sure that your prosthesis is set as close to the correct anatomical position as your gait will allow. Finally, the right components are crucial. We wrote and published a case study on an 82-yearold patient who was walking at 102% of his maximum recommended heart rate on a standard knee. His cardiologist recommended a wheelchair. With physical therapy, a training program, and a C-Leg, he was able to walk at 80% of his maximum heart rate - a rate that his cardiologist approved for walking with a prosthesis. Your prosthetist can do many things to help you, but communication is the first step.
As an amputee, you can do several things to improve your ability to use energy and perform your ADLs more efficiently. Start with yourself and see what you can change. Are you overweight? Are you physically fit? Do you have physical limitations beyond amputation that need to be dealt with? Have you communicated with your prosthetist? Next, work with your prosthetist to optimize your alignment and component selection to closely mimic anatomical gait. Microprocessor knees and energystoring feet can help if you are a candidate. Also, make sure that your socket fits properly. Finally, talk to your physical therapist, prosthetist and physician about a physical-conditioning program
to help you get your energy back. There is no silver bullet, but with effort and teamwork, you do have the realistic opportunity to have more energy for your daily life. Resource Cited: Atlas of Limb Prosthetics: Surgical, Prosthetic, and Rehabilitation Principles. Rosemont, IL, American Academy of Orthopedic Surgeons, edition 2, 1992, reprinted 2002.
USF researchers M. Jason Highsmith and Jason T. Kahle regularly hold amputee running and physical training and therapy events to help teach amputees techniques to stay active.
Jason T. Kahle, CPO, FAAOP, is a licensed prosthetist/ orthotist with nearly 20 years of clinical experience managing prosthetic rehabilitation in amputations of all levels and etiologies. Kahle has served in clinical and research leadership roles including director of prosthetics, residency director, research committees, and co-investigator of funded research projects. He is jointly appointed as an assistant in physical therapy at the University of South Florida’s School of Physical Therapy & Rehabilitation Sciences in Tampa, Florida, and the CEO of Prosthetic Research and Design, PL. His research interests include transtibial (BK) and transfemoral (AK) socket design, microprocessor knees, athletic endeavors of amputees, functional outcomes of amputee rehabilitation, and amputee gait. M. Jason Highsmith, DPT, CP, FAAOP, is a dual-licensed physical therapist and prosthetist. He pursued his master’s in physical therapy at the University of South Florida (USF) and also a doctor of physical therapy degree in manipulative therapy at the University of St. Augustine. While practicing as a PT in outpatient orthopaedic and sub-acute rehabilitation settings, Dr. Highsmith became interested in specializing in amputee rehabilitation. He studied prosthetics at Northwestern University and completed prosthetic residency at Westcoast Brace & Limb in Tampa, Florida. He has since been involved in clinical and translational research related to amputee rehabilitation and prosthetic technologies. Currently, he is an assistant professor of physical therapy at USF and a PhD candidate at USF’s College of Medicine conducting a number of multidisciplinary research projects studying the effects of various prosthetic components on the functional performance of people living with limb loss. His research interests include prosthetic materials science, functional outcomes of amputee rehabilitation, amputee gait, technical aspects of prosthetic fabrication, fitting, adjustment and alignment.
March/April 2012 Amp it up! magazine
O&P Solutions by Kevin M. Carroll, MS, CP, FAAOP
Tools for living: Prosthetic de
he loss of a limb requires significant — and often sudden and unexpected — adjustments in a person’s attitude and effort. Routine activities that were once taken for granted now become major challenges. Obstructions — both physical and intangi-
show you what an amazing difference the appropriate prosthesis can make in your life. Talking with other prosthesis users will also confirm the inestimable value of these tools for restoring your confidence, uplifting your attitude, and conferring on you a sense of liberty and fulfillment.
Photos courtesy of Hanger Clinic
Beginning the journey
ble — loom between you and the daily activities of home, work and play that you formerly enjoyed. Adjusting to these new challenges will require preparation, patience, a support team — and a new set of tools. Fortunately, those facing limb loss today have many more prosthetic options available to them than their parents and grandparents had. Even a cursory Internet search can Amp it up! magazine March/April 2012
Knowledge is your most powerful tool, and, thanks to computer and phone technology, today’s amputees can even access information from their hospital bed. A few clicks of the mouse can open doors to the latest news on how to restore your function and mobility. It is important, however, that you carefully judge any information you find for accuracy and honesty. It’s a case of “let the buyer beware.” You must, therefore, research carefully, critically, comparatively and thoroughly to be a smart and informed consumer. A good way to complement your research and answer questions about your personal situation is to visit your healthcare professional and discuss the most appropriate prosthetic solution for you. Also, ask him or her for help in contacting a peer visitor — another person who has personally experienced limb loss. These individuals can answer your questions from the perspective of someone who has “been there” and perhaps has tried similar types of prosthetic devices and components to those you might be considering. There is even an online community called EmpoweringAmputees.org specifically for anyone affected by limb difference or amputation. It’s a passwordprotected, monitored online community with 2,500+ members, including amputees, parents, siblings, friends, caregivers and healthcare providers. This online community has something for everyone,
such as discussion forums dealing with the latest advancements in prosthetic designs including microprocessor-controlled technology for both upper- and lowerlimb amputees, groups specific to a variety of activities, informative “how to” videos, blogs detailing personal stories of recovery, and much more. If it takes a village to raise a child, it likewise takes a team to support amputees on their journey toward independence. It is helpful to build your own support team, consisting of clinicians, healthcare professionals, peers and family members. This will enable you to consider input, opinions and advice from different perspectives as you face critical decisions about regaining your independence and functionality. Perhaps the best place to begin is restoring your health. Often, when patients lose a limb, other problems are present — e.g., other injuries associated with a traumatic accident or the complications
evices help amputees “Amp It Up” associated with diabetes and vascular disease. Shopping for the appropriate prosthetic device while you are contending with these associated health problems can be challenging at best. Your level of strength and energy, as well as your attitude and outlook, are all strongly affected by your body’s essential instinct to focus first on survival and healing itself.
The pursuit of restored independence follows restored health so allow your support team to help you regain your strength and move forward toward both functional and psychological independence.
Independence and beyond
Independence in your home is the first step, but most of us perceive independence as the ability to function on our own outside the home as well — driving a car and walking to nearby destinations for shopping or recreation. So, as you choose an appropriate prosthesis, keep these goals in mind. Some prosthetic knees and feet are not compatible with driving, while some can be positioned or even
programmed to allow you to drive your vehicle. As you explore your goals for restored mobility, you’ll also discover a variety of prosthetic designs that allow you to pursue specialized sports and activities — from golf to scuba diving, rock climbing, skiing, dancing, biking and much more. Consider your seasonal preferences. Will you want to wear open-toed sandals or flip-flops? Will you want to wear highheeled cowboy boots or ladies’ pumps? If so, your new prosthesis should be versatile enough to adapt to these occasions with adjustable heel heights, split toes and other options. You’ll want to look carefully at the variety of socket systems that can be used to maintain a secure and comfortable connection between your residual limb and your prosthetic limb. Ask how the socket will fit your body. Consider the variety of liners, from silicone or mineral-based liners to traditional socks. Research the various suspension systems, which can use a pin lock, a sleeve or a vacuum system to hold your prosthesis securely to your body, and consider the pros and cons of each. Remember that you are not alone. As you explore these and other possibilities, be sure to ask questions of those on your support team. Your clinician, for example, can evaluate your skin and make an appropriate recommendation. If you have skin injuries, a custom silicone or urethane liner might be the best choice for you. Perhaps amputee peers can share what works best for them. Keep in mind that any major trauma causes one’s energy level and attitude to sink to an all-time low. As your physician and prosthetic clinician consider recommending a prosthetic solution for you, their goal is to determine what your full
potential and functional level will be with your prosthesis when strength and health return — and that can be difficult. A prosthesis that initially meets your needs nicely might not be adequate as your motivation increases and your energy floods back. Although you might be content to simply walk in the beginning, you might find that you are ultimately eager to run or even return to a physically-demanding vocation again — and to perform at a level beyond the capabilities of the prosthetic device you first received. A higherflexibility ankle might be wanted by a roofer ready to return to his craft — or a higher-functioning running foot might be needed for a runner determined to participate in marathons again. One older patient who experienced limb loss was initially fitted with a prosthesis that enabled him to walk around his home and neighborhood. Unknown to
March/April 2012 Amp it up! magazine
us, he was an avid gardener, and, once he returned to working in his garden with renewed energy and strength, he quickly overstressed the limits of his function level 2 prosthesis and broke it by digging with it! He had exceeded our expectations — and his own! — and achieved a function level 3, meriting a stronger, energy-storing and dynamic prosthesis. In considering your long-term choice of a prosthesis during discussions with your clinician, it is thus best to aim high — and commit to equipping yourself for the highest level of performance your dreams can envision. It is important to realize that choosing the right prosthetic device or devices for your particular lifestyle and goals can help you maximize your abilities in sports, hobbies, work and daily activities. Choosing the wrong one, on the other hand, will likely hold you back and diminish your chances of successfully accomplishing your goals. This can result in frustration with the limitations of your prosthesis and potentially timeconsuming and costly efforts to acquire a more appropriate and higher-functioning replacement later.
Financing your prosthesis
Unfortunately, you might be tempted to go without a prosthesis or to choose the least-functional, least-expensive one because you feel that you cannot afford the device or devices you really need.
Amp it up! magazine March/April 2012
The good news is that there are many potential resources for helping you obtain what you need, although it might take some effort to identify them. You should research potential payers and sources of financial support on the Internet and ask your support team and other prosthesis users to share their experiences in locating funding. Medicare provides prosthetic reimbursement for qualified adults over age 65. Private insurance companies cover the prosthetic needs of many people in the workforce. And, if you are jobless and in need, Medicaid is a potential source of payment. If you are not employed and are not eligible for Medicaid, there are numerous other pay sources available. If you are disabled and cannot work, you may be eligible for Medicare benefits — a fact not widely recognized. If you have not yet reached retirement age and don’t have a job or health insurance coverage, identify and contact your state’s vocational rehabilitation agency. Vocational rehab offers help to amputees who don’t have jobs or insurance but are committed to going to school, working a
job, or starting or maintaining a business so that they can support themselves and their families. Vocational rehab can often provide funding to help people with disabilities obtain or repair a prosthesis that is necessary to their functional ability to find or return to work. These agencies might also be able to help you find a job or a new vocational path. They are likely to be aware of employers who are looking for workers, including those that may specifically wish to hire workers who are physically challenged. There are also several organizations, such as the Jordan Thomas Foundation, the Barr Foundation, the Mending Limbs Organization, and the Limbs for Life Foundation, that help provide prosthetic devices for those who cannot afford them (see Funding Resources for Prosthetic Devices). Assistance is also available to pay for specialized prostheses that promote a more active and healthful lifestyle. Payers are increasingly aware of the importance of preventive maintenance and recognize that a person with a missing limb has an
equal need for exercise. Without exercise, an inactive patient tends to gain weight and lose conditioning to the point where even walking can become a challenge. If a specialized device, such as a running foot or a bicycle-riding prosthesis, is necessary to help you maintain a desirable level of fitness, this need should be presented to your insurance company in the form of substantiating letters of recommendation from your physician, which cite your medical necessity for such a device. If the insurance company denies the request and any appeals, organizations like the Challenged Athletes Foundation can often help with funding (see Funding Resources for Prosthetic Devices). You may even be able to get a specialized prosthesis even if you already have a prosthesis that you use for your daily activities.
These and other options may be available, ready to be revealed by just a little digging. Also, don’t overlook funding assistance through religious institutions, your community, or your family and friends. Sometimes creative initiative pays off as well. A small child fascinated by karate was determined to raise his own funding for a prosthesis suitable for the sport. He organized his own kick-a-thon, locating people to sponsor each of the 1,000 karate kicks he performed publicly without stopping! At $1 per kick, his effort was well worth it! Although funding is a difficult challenge, if you continue pursuing ways to achieve your goals and aspirations, you will eventually succeed. So keep your expectations, your spirits, and your energy level high, and don’t let anyone dissuade
you from setting the loftiest goals you can imagine. If you can dream it, you can do it! Determination and creativity pay off. I’ve seen it happen many times. Kevin Carroll, MS, CP, FAAOP, is an accomplished healthcare professional with over 30 years as a practicing prosthetist, visionary researcher, and skilled educator. As vice president of prosthetics for Hanger Clinic, Carroll travels nationally and internationally presenting scientific symposiums and managing clinics for difficult prosthetic cases. He has appeared internationally on news broadcasts such as Dateline, 20/20, CBS’s The Early Show, NBC’s Nightly News, ABC’s Good Morning America, and the Discovery Channel.
Funding Resources for Prosthetic Devices Barr Foundation www.oandp.com/resources/organizations/barr Bowman Limb Bank Foundation www.danabowman.com/bank_foundation.php Challenged Athletes Foundation www.challengedathletes.org The Inner Wheel U.S.A. Foundation, Inc. www.innerwheelusa.com/foundation.htm Jordan Thomas Foundation www.jordanthomasfoundation.org Limbs for Life Foundation www.limbsforlife.org Limbs For U limbsforu.org
Limbs of Love www.limbsoflove.com Lions Clubs International www.lionsclubs.org/EN/index.php Mending Limbs Organization www.mendinglimbs.org Michigan Society To Advance Rehabilitation (M-STAR) www.m-star.org Physicians for Peace Walking Free Program www.physiciansforpeace.org/walking-free.html P.L.A.Y. Foundation www.playfoundation.net Prosthetics Outreach Foundation www.pofsea.org
Rotary International www.rotary.org/en/Pages/ridefault.aspx Shriners Hospitals for Children www.shrinershq.org Vocational Rehabilitation www.workworld.org/wwwebhelp/state_ vocational_rehabilitation_vr_agencies.htm War Amps (Canada) www.waramps.ca/home.html Workers Comp For more information and additional resources for amputees, visit AmputeeNews.com.
March/April 2012 Amp it up! magazine
Jordanâ€™s mission is to assist children of traumatic injury and limb loss with the prostheses that they need to lead a normal, active and happy life. PO Box 22764 Chattanooga, TN 37422 www.JordanThomasFoundation.org (423) 622-9006
2012 Event Calendar January 15 - Athletes with Disabilities Hall of Fame Nominations Open May 26 - Extremity Games Motocross June 22-23 - Extremity Games Main Event October 25 - Athletes with Disabilities Hall of Fame Induction Ceremony
Athletes with Disabilities Networkâ€™s mission: To promote a better quality of life by creating opportunities for people with physical disabilities. 248.829.8353 www.adnpage.org
facebook.com/adnpage | facebook.com/extremitygames
Your Emotions by Amp It Up! Staff
My enemy, my mind Overcom
ur only handicaps are the small thoughts that blind us, the hardened feelings that deafen us, and the irreproachable excuses that paralyze us,” says John Foppe, president of Visionary Velocity Worldwide (visionaryvelocity.com), a corporate motivation company that helps businesses translate visions into outcomes. Foppe is a corporate advisor, author and highly sought-after speaker. He holds a master’s degree in social service and is an artist, husband and father. That’s a mouthful of accomplishments for anybody; however, until John, who was born without arms, was 10 years old, he hated his life. “I was filled with self-pity, a negative attitude, and low self-esteem,” he says. “I was dependent on my family for help with routine tasks like getting dressed and using the restroom. At 10 years old, I couldn’t put on my own pants. The first turning point occurred when my parents practiced ‘tough love’ on me.” It was only when John’s perception and way of being changed that his life also began to change dramatically.
The downward slide
Living with limb loss can certainly lead to low self-esteem, self-pity, fear, self-consciousness, limiting thoughts, and a range of other emotions that can stop a person from enjoying life. When this occurs, it can be called the “de-amping effect” of the mind because it is the exact opposite of “amping it up.” It is the exact opposite of moving toward a better life. Once these emotions and feelings go beyond a safe limit, they can be the start of a quickly growing downward slide into an abyss.
“When there is no enemy within, the enemies outside cannot hurt you.” - African Proverb If you are to live a healthy and happy life as an amputee or someone born with a limb difference, your
Amp it up! magazine March/April 2012
thoughts, perspective and emotions must ultimately be healed in some way; this “de-amping effect” of your mind must be reversed. When this enemy inside your mind is destroyed, outside enemies and struggles will be dealt a devastating blow. The mechanism for reversing this de-amping effect varies from person to person, however. For some people, professional counseling or medication might be required and should at least be considered. For others, there are several potentially effective possibilities. Some people have actually turned off or reversed this de-amping effect through altering their perspective on their own. You might have heard stories of amputees who have basically told themselves, their own bodies and minds, and their healthcare providers, “Don’t tell me what I can’t do!” (See pages 6-10 for examples.)
Peer support & support groups
Others might need more time to develop a new, life-changing perspective. Peer support and support groups can often be beneficial to these individuals. There have been numerous instances in which a new amputee was lying in a hospital bed devastated by his or her limb loss and was dramatically changed just by receiving a visit from another amputee who was
ming the “de-amping effect” of the mind
Jennifer Latham Robinson
wearing an artificial limb or who was now successful in his or her life. Just seeing that another person had overcome limb loss and was now thriving was enough to reverse the de-amping mechanism of the mind. Jennifer Latham Robinson is the patient program director at Westcoast Brace & Limb (wcbl.com). She is also a certified peer visitor and a support group leader for Amputees Together (amputeestogether.org). “As a peer visitor, I love exchanging stories,” Robinson says. “It’s cathartic for me and, hopefully, for the people I visit. My most memorable amputee peer visit was with a young woman who was actually pregnant when she lost her leg. I visited her in the hospital. I’m a congenital amputee, but I did go through two pregnancies and absolutely love motherhood. I assured her that she was still fully capable of being a wonderful mother and that her perseverance would be a valuable lesson for her child. We just sat there together and smiled. Today, her daughter is a beautiful and rambunctious toddler and, yes, she’s an awesome mom.” Many amputees do not want to participate in a support group, thinking that it is a waste of time or just a group of people who whine to each other. “Sometimes,” Robinson says, “I will invite an ‘experienced’ amputee to our support group and he or she will say, ‘I’m doing great. I really don’t need a support group. Isn’t that just for people who are struggling?’ It’s important for someone like this to remember that amputee support groups also need positive and successful members. It provides a wonderful balance. We eventually started calling our meetings ‘networking opportunities’ because that’s what we do. We laugh, share, reflect and have fun.”
Support groups usually have a range of members at different levels in their struggle; some might be having a hard time dealing with being an amputee, and others might be thriving with limb loss and available to help others reach that same level in their lives. Oftentimes, once individuals who resist attending a support group meeting actually do so, they find it a rewarding experience. Sometimes they even find that their support group experience changes their life and sets them on a path toward thriving with limb loss.
Amputee youth camps & other social opportunities
Amputee youth camps give young people with limb loss the rare opportunity to meet others who face challenges similar to their own. These opportunities have been invaluable to many young people whose minds and emotions were “de-amped” and who felt like they were all alone. Being among other kids with amputations who understood them and what they were going through was enough to give them a whole new perspective on their lives. In fact, many camp attendees have gone on to achieve things they never thought themselves capable of. They’ve also developed some lifelong friends and supporters. After Brian J. Johnston’s then-4-year-old son, Brennan, had to have his leg amputated as a result of an March/April 2012 Amp it up! magazine
filling in life始s missing pieces.
Fun empowering adventures for teens and adults with limb differences and limb loss. To support or take part in an adventure, visit footprintsadventures.org
Brian J. Johnston and his son Brennan, who is an amputee
injury in January 2007, the family went through an emotionally, physically and financially exhausting struggle to deal with the loss. When Brennan wanted to go to an amputeefocused camp but none were available for children his age, Brian decided to start one himself “to provide vital support, encouragement and resources to anyone (regardless of age or background) personally affected by or caring for someone with limb loss/difference.” AmpuCamp, a nonprofit organization/event for people with limb loss/differences and their families and caregivers, debuted in August 2009. “The philosophy and focus of AmpuCamp is simply to give others the support I wish we had – and desperately needed – especially at a vital time when our family was struggling to cope with our young son’s ‘accident’ and effectively navigate the uncertainty of things to come,” Brian says. “The camp has changed many lives. Participants often tell me how much it has helped them and their family deal with limb loss.” These and other opportunities to be with amputees are something that young people often can’t find in their local school or sports club.
“As a child,” Robinson says, “I loved going to my regular visits at the Shriners Hospital because it afforded me the opportunity to meet other children with limb differences. Otherwise, I rarely had the chance to get amputee ‘peer’ exposure. Sharing the experience of limb loss can help with coping and can reduce feelings of isolation.”
The written word
Some amputees have even been helped just by reading articles or books about other amputees and seeing how they have dealt with amputation and moved forward in their lives with work, sports, family, relationship, hobbies and school. “Web sites, magazines, books and blogs can certainly make a difference,” says Rick Bowers, editor-inchief of Amp It Up! and AmputeeNews.com. “In my nearly 11 years as an editor of a national amputee magazine, I received numerous letters from amputees who said that the magazine had a profound impact on their lives.”
Throw it into reverse
So whether you want to get back to the place you were before losing your limb or you want to go far above that level, reversing the “de-amping effect” of your mind is essential. Which mechanisms for doing so might work for you?
Resources for Helping Reverse the “De-Amping” Effect of the Mind Camps
AmpuCamp ampucamp.org Amputee Coalition’s Paddy Rossbach Youth Camp amputee-coalition.org/ youth_camp.html Camp No Limits nolimitsfoundation.org
Heather Mills Amputee Forum heathermills.eu/forum/
Information Resources Amputee Coalition amputee-coalition.org
The Cure Our Children Foundation “How to Succeed as an Amputee and The Amputee Resources Page” cureourchildren.org/ amputee.htm#1
Amputee News AmputeeNews.com
Google Blog Search google.com/blogsearch Search for amputee
Amputee Coalition’s National Peer Network amputee-coalition.org/ npn_about.html
Publications, Web Sites & Blogs
inMotion amputee-coalition.org/ inmotion_about.html
Amp It Up! ampitupmag.com
Will. Go. Do willgodo.com
Amputee Coalition amputee-coalition.org
Amputee Empowerment Partners empoweringamputees.org
First Step amputee-coalition.org/ aca_first_step.html
Amp it up! magazine March/April 2012
Google Groups groups.google.com Search for amputee groups
International Child Amputee Network (I-CAN) child-amputee.net Less Than Four lessthanfour.org
Amputee Coalition Support Group Listings amputee-coalition.org/ support_groups/ npn_group_list.asp Amputees Together amputeestogether.org Yahoo Groups groups.yahoo.com Search for online amputee support groups
amp No Limits (CNL) has announced its 2012 camp schedule, and it is offering fun and educational experiences throughout the year. CNL camps provide a unique family camping experience that offers parent and child peer support, adapted recreational activities, and state-of-the-art prosthetic
Get ready for camp in 2012!
Who Should Attend?
• Children and adults with limb loss • Family members of children with limb loss • Healthcare professionals and prosthetic specialists
Note: A parent or caregiver is required to attend for children under age 10.
2012 Camp No Limits Schedule
Camp sNOw Limits March 2-4 - Sunday River Ski Resort, Maine Camp No Limits California June 15-18 - Big Bear, California Camp No Limits Missouri June 24-27 - Potosi, Missouri
education. CNL offers programs designed by specialized occupational and physical therapists, prosthetists and adult amputees aimed at optimizing the functional independence of children living with limb loss. According to CNL, attendees can expect the following benefits:
• Learn about the latest prosthetic options available, including myoelectric technology, recreational options, adaptive equipment, and organizations that help fund prosthetic components • Learn about recreational programs available for children with limb loss • Learn functional ways to complete various daily living skills with or without prosthetic devices and participate in challenging recreational activities • Develop self-confidence, personal aspirations, and lasting friendships with children and families
Camp No Limits Idaho July 24-27 - Coeur d’Alene, Idaho Camp No Limits Maine July 31-August 4 - Rome, Maine Camp No Limits Maryland TBA (October) Camp No Limits Florida TBA (November) To learn more about Camp No Limits or register online, visit www.nolimitsfoundation.org. March/April 2012 Amp it up! magazine
Tell your friends, family members, and other amputees about these informative publications today! AmputeeNews.com