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Issue

august/september 2012

#03

this issue

FORGIVENESS 12

FROM TRAGEDY TO TRIUMPH 14

The Health & Lifestyle Magazine for Amputees Who Want to Live More Fully

Amputation: an opportunity for a better life

MENTORING 22

ROLE OF OCCUPATIONAL THERAPY 30


Interested in becoming more active?

Make plans to attend a First Clinic by OPAF! Upcoming clinics include:

November 10

First Swim San Antonio, Texas

December 15

First Volley Palm Desert, California

January 12

First Climb and First Swim Phoenix, Arizona

For more information:

www.OPAFonline.org 319.235.4318 info@OPAFonline.org

Scan the code below with your smart phone to see a one minute video on First Clinics by OPAF


The Health & Lifestyle Magazine for Amputees Who Want to Live More Fully

Volume 1, Issue 3 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

W

elcome to the third issue of Amp It Up! magazine! We are thrilled to be growing more every day. If you haven’t already done so, please help us spread the word about this publication. Simply tell five amputees you know about Amp It Up!, and ask each of them to tell five others about it. By doing so, you will help us grow and become a more effective communications tool for the amputee community. The more people we are able to reach on a regular basis, the more we can accomplish. When amputees need to unite on a political issue; need to learn about an important event; need to know about support groups or peer support services; need to be informed about ways to prevent a second amputation or deal with pain; etc., we can be the vehicle for making that possible. But, first, we must build a regular audience that will help us reach more and more amputees. Sadly, no organization or publication for amputees is currently reaching more than 10 percent of the amputee population on a regular basis. I would even venture to speculate that no organization or publication for amputees is reaching more than 5 percent on a regular basis. Unfortunately, that means that perhaps 90-95 percent of the more than 2 million amputees in the U.S. are needlessly facing amputation alone. Imagine how large that

Editor-in-Chief Director of Communications Rick Bowers rick@EurekaCustomMedia.com

number is when we talk about amputees around the world! We clearly have much work to do if we want to reach amputees, and you can be a part of helping us accomplish that goal. This issue focuses largely on “Beginning Your New Life as an Amputee.” Interestingly, you will find that many amputees deal with the same problems and have the same emotions in the early period. One of these problems is a lack of access to peer support, and another is a lack of information about life as an amputee. We would like to use Amp It Up! to help solve both of these problems. We want to keep new amputees informed about available support groups and peer support and to provide them with information about living with an amputation. I’ve met and talked to a lot of amputees in the last 12 years, and I don’t think I’ve ever met or spoken with an amputee who didn’t want to help others. That’s one of the things I love most about this community and one of the reasons I continue working in this field. Spread the word. Help another amputee. Help bring this community together to make life better for amputees everywhere. Thanks in advance for your assistance.

Creative Director Michael Shannon michael@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.

Rick Bowers

Editor-in-Chief

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Contents

22 26 28

6

18

10

regular

From the Editor 03 Upcoming Events 31

12

features 06 10 12 14 18 22 26 28

Cover Story: Amputation: an opportunity for a better life Finding Support: Adapting to my new life Your Emotions: Forgiveness: My personal triumph From tragedy to triumph Networking: Meeting other amputees and why it’s so important Making a difference: Changing lives every day through peer mentoring Physical Therapy: Achieving the best outcomes for your residual limb after amputation Occupational Therapy: Upper-limb amputees gain skills and independence from specialized rehabilitation

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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


Cover Story by Ronnie Dickson

Amputation: an opportunity for a better life I had my left leg amputated above the knee at age 17, and I would not give up any of the experiences I have had - or the amazing people I have met - as a result of that decision for anything in the world. At age 5, I was diagnosed with Trevor’s disease, a problem with the growth plates of my left knee and my left ankle. The disease slowed the growth of the bones in those areas, which resulted in my left leg being shorter than my right. I underwent multiple surgeries as a child, most notably a leg-lengthening procedure that took approximately one year to complete. Despite physical challenges, I continued to be active as a child. I played golf, participated on a swim team, and actively pursued my passion for soccer. At age 14, bone tumors began to form on my growth plates, limiting the range of motion in my knee and ankle. By the time I was a senior in high school, I was

in so much pain after soccer practice that I wasn’t able to walk again until the next morning. This is when I knew I had to find a way to live a better life and began looking for the path that would allow me to do that. After graduating from high school, I made the decision to have my leg amputated above the knee. Although I didn’t know much about prosthetics at that time, I had seen some amputees on news programs doing some amazing things, and I decided that amputation was a better alternative than living with a painful and basically useless leg. After the amputation, I was fit with a prosthesis and attended college for the next year and a half. I got along great but felt like something was missing. Two chance events then occurred that not only changed the course of my life but brought back my passion for it!

Adaptive Climbing Clinic participant

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Although limb loss is a life-changing event, I would argue that it is also an opportunity to start over with a blank tablet of possibilities and to paint whatever reality you choose as you rebuild your life. Trying New Things I was sitting at my prosthetist’s office flipping through a magazine published for amputees when I came across an ad for an adaptive sporting competition called the Extremity Games. Out of all the events listed, rock climbing especially caught my eye. That week, I found a local climbing facility, shed my prosthesis, and gave it a try. Climbing was difficult, and I only made it to the top of a few climbs that night, but I felt that something inside me that had been missing had been restored. That same month, my girlfriend was participating in her first marathon, and I went with her to support her. As I walked around at the event, I came across a booth for a group called the Challenged Athletes Foundation (CAF). CAF is a national organization that provides opportunities, adaptive equipment, and

support for people with disabilities who want to get back into sports. Over the next year, the organization gave me the tools and support I needed to learn how to run again. Through connections I made there, at age 20, I learned how to ride a bike for the first time in my life. It was exhilarating! One thing led to another, and over the past five years, I have not only continued to ride, but I have also competed against able-bodied athletes in triathlon and rock climbing events across the country. I had no idea what I wanted to do with my life prior to opening myself up to some of these experiences that I was fortunate enough to participate in after losing my leg. By connecting with other adaptive athletes at the Extremity Games, I realized that the only boundaries we have are the ones that we place upon ourselves. I was surrounded by athletes who were passionate about achieving the goals that they

Adaptive Climbing Clinic group

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persona. Simple everyday activities take adjusting to. As human beings, we have the remarkable ability to adapt to situations and changes throughout our lives. Limb loss, while it may require a more significant adjustment, is no different. Most people who lose one or more limbs regain a sense of normalcy and are able to continue on with their lives. Although limb loss is a life-changing event, I would argue that it is also an opportunity to start over with a blank tablet of possibilities and to paint whatever reality you choose as you rebuild your life. We are stronger than we sometimes believe we are. It takes courage, but if you make a commitment to yourself to give it your best effort, you will come out better on the other end because of it. I believe that Charles R. Swindoll was correct when he said that “life is 10% what happens to you and 90% how you react to it.“ We are defined not by what happens during the course of our lives but by how we react to those events. It is a matter of overcoming adversity, building a support group of positive individuals, harnessing that energy, and thriving.

Ronnie and Tim

had set their minds to, regardless of what challenges stood in their way. My inspiration to try rock climbing led to my passion for the sport. My world felt brighter, and I experienced a sense of freedom I had never felt before! Through my interaction with CAF, I suddenly had this huge support group, and they encouraged me to try things I had not even thought to try when I had two legs! When they suggested I run a 5K race, I thought they were crazy, but the following year, I entered my first full Olympic-distance triathlon. I would not have been able to accomplish these things, or quite frankly even have dreamed of challenging myself in these ways, without the help of CAF, other adaptive sports organizations, my friends and my family. Having a good support team is crucial to success. No great accomplishment happens alone. The thing I treasure most from this entire journey is the relationships I have made with the people I have had the opportunity to meet. It is rare to meet people of such strength, drive and fortitude, but this community is filled with incredible personalities with incredible stories. The energy is infectious and leaves you with the sense that the world is full of possibilities. Everyone handles adaptation to disability differently. Your body is physiologically adapting; you are using muscles and parts of your body in completely different ways than before. Psychologically, you are integrating a prosthesis into your body image and

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So why should we try new things, especially after we’ve faced some type of difficulty? We should try new things simply because we can and because they give us the opportunity to discover new passions when life seems to be trying to tell us that we can no longer do certain things. Our passions drive us in life, make us whole, and help us grow on a personal level. Even if we only try an activity once, it is one more accomplishment we have under our belt. If we enjoy the activity and it becomes a passion, it could be life-changing. Until we try, however, we never know what we might benefit from the experience. Opportunities do not just appear out of thin air. We have to take the first step and allow ourselves to get out of our comfort zone. There are nonprofit organizations across the United States that offer opportunities for us to try a wide variety of activities and sports. They are practically begging for new participants to come out and join them, and there is no reason why we can’t be among them. The second we let go of all of our excuses is when we have the opportunity to reach our full potential. What would you attempt to do if you knew that you could not fail? Ronnie Dickson currently works as a prosthetist at Prosthetic & Orthotic Associates in Orlando, Florida. He continues to share his passion for climbing, hosting adaptive climbing clinics across the country. He was one of the first climbing athletes to represent the United States at the World Paraclimbing Championships held this fall in Paris, France.


Sports & Recreation Resources Achilles International www.achillesinternational.org Adaptive Action Sports (AAS) www.adacs.org Athletes with Disabilities Network (ADN) www.adnpage.org Challenged Athletes Foundation (CAF) www.challengedathletes.org Disabled Sports USA (DSUSA) www.dsusa.org

a statement NOT a question a statement

it’sNOT ana attitude question it's an it’s aattitude book book it’sit'sa anew TV show it's a new TV show http://youtube.com/user/WSICTV

No Barriers USA www.nobarriersusa.org

http://facebook.com/whosaysicant

Orthotic and Prosthetic Activities Foundation (OPAF) www.opfund.org

http://whosaysicant.org

Paradox Sports www.paradoxsports.org These are only a handful of the largest programs out there to help people with physical disabilities get back into sports and recreation. There are also many amputee camps that provide opportunities for both children and adults. They include the following:

https://twitter.com/whosaysicanttv

http://whosaysicant.org/shop

Inspiration and motivation forall all Inspiration and motivation for

Crutches built for LIFE! Lightweight & Durable

Adventure Amputee Camp www.adventureamputeecamp.org

Shock Absorbing Sandshoe & Snowshoe Tips

AmpuCamp www.ampucamp.org Amputee Coalition’s Paddy Rossbach Youth Camp www.amputee-coalition.org/events-programs/ youth-camp/index.html Camp No Limits www.nolimitsfoundation.org Footprints Adventures www.footprintsadventures.org

Nico Calabria USA Amputee Soccer Team

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Finding Support By tammie higginbotham

Adapting to my new

I

n April 2002, my world changed forever in a moment. An 18-year-old with a 15-year-old passenger hit me while I was on an ATV (all-terrain vehicle). The driver was using a cell phone. The accident caused many injuries, including the severing of my left foot, which had to be reattached. Four days later, the foot had to be amputated due to insufficient blood flow. I spent the next couple of months just lying in a hospital bed trying to heal. Many questions went through my mind during that time. How was it going to be when they put my new leg under me? Would I be able to resume all of the roles that I had in my life - a wife, a daughter and a caregiver to my father? Would I be able to resume working and running my family’s farm? I mentioned to the medical staff several

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times that I wished that I had someone to talk to about life after amputation. I wanted to ask them a lot of questions so that I would know what to expect. While I was in the trauma hospital before being transferred to a local hospital, a prosthetist came into my room, introduced himself, and put a shrinker sock on my residual limb. He also left a couple of pamphlets and magazines for me to read. Both of the magazines were inMotion, a publication of the Amputee Coalition. Unfortunately, at that time, having suffered a brain injury, I found it too difficult to read. When I tried, the words just seemed to swim around on the pages and make my migraines more intense. It took almost six months before I could read without feeling ill. And, unfortunately, during that time, there were no other amputees

Amp it up! magazine  august/september 2012

around to talk to. Sometimes, I probably drove my poor prosthetist crazy with all of the questions I asked him. Four more months of my life were consumed with healing, physical therapy, the casting of my first and many other prosthetic sockets, and learning to stand and walk on my first prosthetic leg. And I still had many, many questions. How do I do everything? How delicate is my prosthesis? Why is it so expensive? What is the best way to care for it? Must I wash my ply socks every night? What about traveling and riding a horse or a motorcycle? They were just little questions, but they were large to me. I used to wish that I just had someone to talk to about all this - to ask about the ins and outs of living as an amputee. In my head, I hadn’t stopped being the person I


w life was before the accident, but my body was certainly different. I wondered if I would be able to do everything that I had done prior to the accident. Could I still be my father’s caregiver, a chief farmhand and a boss? Could I still maintain the home that I shared with my husband? And if I could do these things, would I have to do them a little (or a lot) differently? Finally, six months after my accident, I could read an article and sit at the computer and visit amputee Web sites. Once I could read the first inMotion I had, I devoured it from front to back. I learned that there were others who had gone through the same thing I was going through. I learned that they were still living good lives, although their lives had changed in many ways. I also visited the Amputee Coalition’s Web site (www.amputee-coalition.org) and other amputee Web sites and forums. I found some of them to be too political, and there was too much fighting on others. Some were just plain wannabe or devotee sites for those who want to be an amputee or are sexually attracted to them. If you are going to search for amputee sites on the Internet, be sure that they are safe before posting any private or important information on them. I finally settled on the Heather Mills Amputee Forum (www.heathermills.eu/forum), the Amputee Coalition Web site, and a little-known Web site just for women (LadyAmp.com). On these sites, I found a lot of the answers that I had been looking for. Most importantly, I found a place to ask questions of people who are mostly just like me. I felt a lot more comfortable asking them my questions. Most able-bodied people I know, am related to, or have met might think they know what it is like being an amputee, but unless they live it,

they really don’t. I found places where I could ask any questions that might come to my mind, and usually someone had an answer. After a couple of years spent healing, I was finally able to attend my first Amputee Coalition national conference, and there I made many friends. Some of them are just passing conference friends, but some of them have become very dear, heartwarming friends for life. But, most importantly, I have never met a stranger at one of the Amputee Coalition national conferences. Everyone is a friend, and, if by chance you have a problem, someone is always willing to lend a hand, a piece of advice, a tip, or just help you make some great memories. There are exhibits and seminars, and I’ve always learned something important at them. And now, I have also discovered the Orthotic and Prosthetic Activities Foundation (OPAF) and the First Clinics (opfund.org). This organization teaches amputees that they can still get out and do things - that many activities are still available for them. Although all of these things have helped me adjust to my new life after amputation, as an amputee, I know that I will always have some sort of issue affecting me and might need to make changes to adjust. I might, for example, have to change prosthetic devices, change socks, change how I do something around the house or farm, or change how I wear my prosthesis because of health or physical issues. One thing new amputees need to understand is that you have to be a little flexible and a bit of an optimist. Each new day is always a different day. It’s often a matter of how something might fit, if it will fit, and whether or not it will function correctly. There are so many variables out there that it is hard to

even think of them all. One thing I hope these days is that I am helping other people somewhere somehow learn to live their lives better as amputees. I have firmly come to believe in “paying it forward.” I do not want other amputees to have to struggle to find information and assistance like I did as a

at I sh th to talk i w o one ed t “I us d some - to ask a is h just ut all th d outs o .” an b to a the ins mputee t a u n abo as a ving of li

new amputee. I hope that I can help them adapt and excel just as others did for me. Tammie Higginbotham lives in central Illinois with her husband, Jon, on their farm. She worked as a certified nurse’s aide for many years. She also worked as a tax preparer until recently deciding to pursue other things. Higginbotham holds or has held the following positions: OPAF Advisory Board Member NUERC State of Science Symposium Advisory Board since 2010 Amputee Coalition Volunteer Peer Visitor Coordinator Amputee Coalition Certified Peer Visitor and VOT Member Amputee Coalition Conference Committee Member Heather Mills Amputee Forum Administrator Limbs4Life Amputee Forum Moderator Amputee News Advisory Board Member For additional resources, visit AmputeeNews.com and click on the Resources tab at top left.

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Your Emotions by shauna mote

Forgiveness: My personal triumph The Merriam-Webster dictionary defines forgive as “to cease to feel resentment against (an offender).”

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e all remember the day we lost a limb. For me, that day was February 15, 2005. The evening was balmy for February in Michigan so I threw my jacket in the back seat of my car as I drove home from a meeting in town. The next conscious thought I had was moving down a hallway in what I was to learn was the Trauma Burn Center at the University of Michigan Hospital. It was hard to move, and I hurt everywhere. As I became conscious, I began to take inventory. I had a collapsed lung, broken ribs, a frozen shoulder, lacerations and contusions, which all accounted for the numbness in my left side. My legs felt numb, but I could move them with effort. Then, at that moment, I knew that both of my legs were missing from above the knees. Somehow, I knew they were gone. I don’t know how, but I knew. I had been in an accident. My husband told me that on my way home I had been hit by a semi-truck as I was making a left turn about a mile from home. I learned that the driver was intoxicated at three times the legal limit for a truck driver, had been drinking all day, and had tried to leave the accident scene. Only losing control of his truck and hitting a tree down the road stopped him from getting away. I later learned that he had an extensive record, which included a DUI (driving under the influence) arrest. Federal law prevents prior offenders from having a valid CDL (commercial driver’s license), and he should not have been behind the wheel of a commercial vehicle. I still had many surgeries ahead of me and weeks of recovery. That would be my focus for the next two months. I shed

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tears from pain, from frustration with my slow progress, and from not being at home with my family. I couldn’t think about what had happened and why I was there. My energy went into recovery. As time went on, I learned that the truck driver had pled guilty to a lesser offense and the prospect of probation was being raised. With help from the nursing staff, I was able to use a computer to write a letter to the judge. Because of my letter and other letters the court received, the judge refused to accept the plea bargain and sentenced the driver to three to five years in prison. I was able to rationalize that many drunk-driving offenders walk away free so even getting a few years of jail time was better than nothing. Two months after the accident, I was moved to St. Joseph Mercy Hospital for rehabilitation. I was finally able to leave the hospital gowns behind and wear regular clothes as I entered the rehab phase. I was in a new and different environment with medical staff I didn’t know and who didn’t know me. I needed to learn how to dress myself, use a wheelchair, transfer, and take care of my personal needs independently. While I wanted to go home, it was also a very scary thought. I had felt safe while at the University of Michigan Hospital, and now reality was setting in as we started planning for my discharge in a month. I still didn’t recall the accident, and I don’t to this day. I began to feel anxious, wondering if I could handle going home. During a PT (physical therapy) session, my mind started racing. Can I do this? Why did this happen? How will I manage? What will people think? Can I go back to work? Will I be dependent on someone every

Amp it up! magazine  august/september 2012


time I want to leave the house? More and more questions began to run though my mind, and it finally hit me that I wouldn’t be here if it weren’t for that selfish man who chose to drink and drive! All of the calm and acceptance I had managed until now was gone. I had a huge meltdown. I cried. I screamed. I banged on anything I could reach. I wanted to throw things but somehow managed to restrain myself. The PT staff moved me to a private room, and I asked them to leave me alone. I needed this time to myself. For the next few hours, I cried and screamed at the world. I didn’t want to see anyone. I hated everyone at that moment and most of all the drunk driver. How could he? How dare he? What was he thinking? Why didn’t he think about someone besides himself? As the tears slowed, I began to feel calmer. My mind began to function again, and I recalled an episode of The Oprah Winfrey Show that I had seen. I don’t recall who her guest was or even when the show aired, but Oprah and her guest were talking about forgiveness. Oprah talked about forgiving someone without ever talking to them - a concept I had never considered before. As children, we’re taught to apologize when we’ve hurt someone and to ask him or her to forgive us. It always involves talking to the other person. Oprah and her guest discussed the idea that holding a grudge or being angry at someone hurts yourself the most and not the other person. If you can let go of anger over a hurt or injury, you help yourself. You can choose to tell the other person or not; it’s the act of forgiveness itself that helps you heal. I remember thinking at the time that this was a great concept - and one that might make the world a better place if practiced. As these thoughts went through my mind, I realized that I had a chance to begin healing emotionally. I made a conscious decision to let go of the anger. I imagined a balloon with my hate, my hurt, and my anger inside. I held the balloon up in the air and let it go. I imagined it floating away, higher and higher. I watched it in my mind until I couldn’t see it anymore. My breathing slowed, and I felt calmer.

This wasn’t the end of my anger, however. I was getting there, but I still had work to do. Over the next few weeks, I thought about the drunk driver and tried to understand how he could care so little for other human beings. I knew that he had a long record; this wasn’t his first encounter with the law. I wondered where he had gone wrong and why someone hadn’t helped him get his life together. Everyone is born into this world as an innocent baby. It’s our parents, family, friends, schools, religious institutions, work, the media and other things that influence who we become. Somewhere along the way, this man didn’t get what he needed. We see it happen every day. People have choices, but we make those choices based on our upbringing and our experiences. I recalled a book written by Hillary Rodham Clinton titled It Takes a Village. Somewhere along the line, this drunk driver’s village had failed him. This realization enabled me to forgive even more. I’ve never had a conversation with the drunk driver and never intend to tell him I forgive him. Unfortunately, I doubt it would make a difference. He was released from prison on February 14, 2010, and I have not had any contact with him nor do I want to. The fact that I forgave him has allowed me to move on with my life and has brought me a sense of peace. I returned home where I still had some challenging times ahead. I was able to return to work, I learned to drive, and I slowly put some balance back into my life. The forgiveness I gave to the man who changed my life has stayed with me. I only think about him when someone asks. I can drive past the corner where the accident happened and not think about the night that changed my life. Forgiving the drunk driver who took my legs gave me back my life. My life has changed, but I’m alive and living life to its fullest! Shauna Mote is the Limb Loss Support Coordinator for the University of Michigan where she talks with patients before and after amputation. She facilitates U-CAN (University of Michigan Community Amputee Network) and participates in volunteer activities that help improve the lives of people with disabilities.

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BY AMP IT UP! STAFF

From tragedy to triu

Ni ck Ca nn on

an d

Jo hn

on

th es et of Am er ica n

From terrible tragedy to great triumph. That’s an appropriate shorthand way to describe John Clint Mabry’s life from 2000 until the present. In 2000, John was a 22-year-old senior at Baylor University in Waco, Texas, with lots of hopes and dreams for his life. “I was on a full-ride scholarship as a videographer for the Baylor athletic video staff, was social chair of my fraternity, and was close to graduating,“ he says. “All seemed to be going great at that point in my life.” It was Spring Break, and John and three of his friends had just returned from a cruise out of New Orleans. A few days of fun in the sun were over, and it was now time to get back to school and start cracking the books. John and his three friends loaded up in his friend’s SUV and headed for Baylor. None of them could have imagined the tragedy that would strike their lives just a few hours later. Not too far from home, just outside of Houston, the SUV’s right rear tire suddenly blew out, causing the SUV to roll a dozen times across Interstate 40.

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umph The peer support John received from other amputees was invaluable, he says. “It made all the difference in the world to me. Seeing how they had adapted to life after losing their limbs gave me a positive outlook going into my amputation that I otherwise would not have had. I probably would have kept my mangled leg and had a terrible quality of life without their support.”

So n

Finding freedom

When the tumbling car finally came to a stop, John’s legs were crushed. The other two passengers had minor injuries. The driver died in the helicopter that airlifted her from the scene of the accident. It was March 11, 2000 - a day that John will never forget. His Web site (http://1footloose.com) is dedicated to Ashley Lea Fuhrmann, the young lady who was driving the car and was killed in the accident.

Struggling with a mangled leg

“I had over a dozen surgeries from March 2000-2001,” John says. “Recurring infections kept my leg from ever stabilizing, and, after seeking peer support from a couple of amputees, I found the confidence to have my lower right leg amputated below the knee in March 2001.”

Once the leg was gone, John started putting his life back together. In fact, he became even more active than he was before the amputation. He says that he coped with the loss of his leg by challenging himself with new and exciting adventures. “Nearly losing my life,” John says, “is what it took for me to realize that we are all free to do anything! When you’re laid up for most of an entire year, as a young and active 23-year-old, you have a lot of time to think about what you could have done with your life. In the first year after my amputation, I graduated from Baylor, traveled all through Europe, went skydiving in California, went deep-sea fishing in Florida, went golfing in Cape Cod, and went wakeboarding in Michigan. In 2004, I married my fiancée, Sarah Turnbaugh, who I met after my accident.” Now, he also skis, participates in triathlons, and plays basketball.

A desire to help others

All of this extreme living of life started with the lifechanging peer support he received from other amputees, and that experience made him realize that he too wanted to help other amputees and their family members adapt to their new life circumstances - just like he‘d been helped. As a result, his educational and career plans also august/september 2012 Amp it up! magazine

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changed. Although he’d originally been a telecommunications major and then a communications major and had found a related job in Dallas after he graduated from Baylor in May 2001, his heart was no longer in it. The desire to help others was too strong. He resigned from his job in 2002 and enrolled at San Diego State University to pursue his master’s degree in rehabilitation counseling. While working on his master’s degree, John also started working at the Challenged Athletes Foundation (CAF), first as a volunteer and then as a full-time program manager for the organization’s peer mentorship program. This position gave him the opportunity to do motivational speaking at local schools, colleges and businesses.

More opportunities

Then, in 2004. while he was still a student at San Diego State University and working with CAF, a couple of amazing opportunities came knocking on his door. He was offered the chance to appear on JAG and to be on the FX series Over There. He was hired as an amputee consultant on Over There and was also a body double for his cousin, singer/actor Josh Henderson. Henderson played a soldier whose leg was amputated as the result of a war injury in Iraq. “Working on Over There showed me that there was a niche in the Hollywood market for amputees,” John says, “so my wife and I moved to Los Angeles so I could pursue acting full-time. In the four years we lived in L.A., I was involved in several projects, including Superbad, ER, JAG, Brothers & Sisters, Sublime, and American Son, with Nick Cannon.” These experiences gave John the chance to meet a lot of Hollywood players and make a lot of great connections, including Nick Cannon, Adam Sandler, Bruce Willis, Demi Moore, Ashton Kutcher, Anna Faris, Jonah Hill, Seth Rogen, Penny Marshall, Katharine McPhee and Steven Bochco. Ultimately, however, John decided not to pursue a career in Hollywood “at this time.” “I have two incredible boys,” he says. “Larson is 4, and Austin is 1. The unpredictability of Hollywood is tough when you have a young family like I do.” Instead, he decided to pursue his passion for rehabilitation counseling. He had graduated from San Diego State University in 2005 and began to use his knowledge to help others come to terms with the tragedy in their lives. Over the years, John has talked to hundreds of new amputees. Mainly, he lets them know that they are

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John on the set of Over There

not alone and that there is still life after amputation. In addition, he provides them with practical information about daily living, returning to an active lifestyle, dealing with relationships, and returning to school or work. His amputee peer supporters, family, friends and faith helped him when he was down, and now he is giving back. Today, John still acts as a spokesperson for the Challenged Athletes Foundation, speaking at schools, business meetings, and sports events and helping the organization with fundraising. In fact, his Hollywood experience and connections paid off for CAF in 2005 when Steven Bochco and his wife, Dayna, heard of his involvement with the organization and made a generous donation. The couple hosted a fundraiser and raised more than $20,000 for the organization.

A new path toward triumph

Beyond the glitter and glamour of Hollywood and the opportunity to help other amputees emotionally, John’s life recently took another big turn when another unexpected opportunity popped up. While participating in the Nashville Muddy Buddy Ride & Run in Tennessee in 2010 on behalf of CAF, he met Mark Cleveland, the founder and president of Swiftwick, a company that develops and manufactures high-performance compression socks with moisture-management capabilities. Cleveland gave John a free pair of regular foot socks, and that gift got the young man thinking about the needs of his fellow amputees. A few days later, John visited the Swiftwick office in Brentwood, Tennessee, with a suggestion: Swiftwick’s sock technology, he argued, could be a game changer for

Nearly losing m it took for me t that we are all anything!


John on the set of Superbad with Seth Rogen, Jonah Hill and Michael Cera

my life is what to realize free to do

amputees if the company could design a sock that fit onto an amputee’s residual limb instead of a foot. “I saw the need when John first approached me with the issue,” Cleveland says. “However, at the time, we could not make a product with a seamless linked toe like we do now. Having a seamless toe in the amputee sock was vital to the overall comfort and performance inside a prosthetic liner, and I just could not do that initially.” From 2010 to 2012, Cleveland and John kept in touch and continued to explore the possibilities. “Then,” Cleveland says, “a moment of inspiration hit when, at the Country Music Marathon Expo here in Nashville, we got word of some amputee runners benefiting from wearing our regular off-the-shelf socks inside their prosthetic liners. I knew if we could manage sweat relatively effectively with a foot sock being used as a stump sock, then we could really make a huge impact if we designed an amputee-specific sock. And that’s how we came up with Swiftwick’s Valor line of amputee socks.” This May, Swiftwick hired John as product developer and amputee consultant to help develop, test and promote the new line. In just four months, the company produced 12 different prototypes and a final

product that is set to be released on a limited basis on the company Web site (www.swiftwick.com) and at select prosthetic facilities at the end of September 2012. “I have been blessed with an opportunity to help millions of amputees around the world through the development of this new revolutionary product,” John says. “I am helping develop a sock specifically designed to meet the needs of amputees who struggle with sweat buildup inside their prosthetic limbs. That’s pretty much every amputee.“ John says that these new amputee socks have already enabled some early test users to triple their distances in running without having to take their prosthetic leg off to dump sweat out of it. Moreover, he says, the product has already helped a couple of amputee athletes break world records and win several medals at the 2012 Paralympic Games in London. John has now officially taken the company‘s motto - “Do what moves you!” - as his own, even though he‘d already been unofficially following it since a short time after his amputation. “I have had the opportunity to do some pretty special things since becoming an amputee,“ John says. “As long as what I do makes a positive difference in other people’s lives, I am accomplishing my dreams, and that’s what matters most to me. That is truly what moves me.” For Swiftwick product release information, visit and Like the company at www.Facebook.com/swiftwick and/or follow @swiftwick on Twitter. To learn more about John, visit his Facebook page (John Clint Mabry) and/or follow @johnclintmabry on Twitter.

Peer Support Resources Amputee Coalition National Peer Network http://www.amputee-coalition.org/ npn_about.html Amputee Coalition Support Group Listings http://www.amputee-coalition.org/ support_groups/npn_group_list.asp AmputeeNew.com Support Group Resources http://amputeenews.com/resources/ support-groups-2/ Amputee Empowerment Partners www.EmpoweringAmputees.org

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Networking by Neal Seigfried

Meeting other amputees a Networking. It’s one way of allowing others into your inner sanctum. It’s also a way of letting them help you make decisions that you might otherwise make recklessly with too little knowledge and too much emotion.

I’ve always been one to face problems head-on, but I’ve never feared asking others how they feel about things I might know little to nothing about. When in doubt, you need to go to the experts, and that’s exactly what I did when I was faced with having to decide whether to have my left foot amputated or not in March 2004. I decided I could not make such a lifechanging decision on my own. My two doctors were giving me mixed ideas about my future, and my family and my nurses were all opposed to the idea of amputation. They thought that any foot was better than no foot. Still, I really needed to know if amputation would be the right answer for me and my future. Since I lead a very active life and work two jobs that depend heavily on my legs, before deciding to have an amputation, I needed to know that my life as I knew it would not change drastically. I needed some education on the subject. I searched online for information

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about prosthetic devices and amputation, and my family doctor said he knew a prosthetist who was willing to talk with me. Even the prosthetist, who was not an amputee himself, was opposed to the idea of amputation based on the experience of his patients who suffered chronic phantom pain. He allowed me to talk with two of his patients who happened to be in the office at the time, one of whom was an orthopedic surgeon. I could not even tell that they were amputees as they walked into the room. They both showed me their prosthetic devices and spoke candidly about the ups and downs of amputation. In the end, they both agreed that amputation was not the end of the world. They


and why it’s so important

agreed that a below-knee amputation could be the best possible solution for my situation. I made the decision to amputate based on the information I received from these two amputees. Then, following my amputation surgery in April 2004, I felt that I needed more guidance. My wife had read in the newspaper that we had an amputee support group in Tulsa so I went to my first meeting in June where I met two amputees who helped me deal with my sweating and sock management issues. Neither of these issues had been explained to me by my first prosthetist. I then found an article about a national conference for amputees that was being held in July. I felt the need to go to the conference and find out what my new life as an amputee was going to be like. That was the best decision I ever made. I knew the instant I entered the hotel that that this conference was going to be a real eye-opening experience. Suddenly, I wasn’t the only amputee around. I felt more normal being surrounded by other amputees. I met some wonderful people that weekend who were both empathetic and knowledgeable. I received a lot of help from others, and I also realized that, even as “green” as I was, I could help others. I later discovered some online forums

for amputees as I searched the Web for information. I became a contributing member of a few of them, and I found that I enjoyed using my limited experience to help others. Helping other amputees became my goal. I attended every meeting of our support group, even though I was the only attending member some months. The following spring, our support group went through peer visitor training so that we could learn the best way to help new amputees at local hospitals. Networking and helping others has been the upside of losing my leg. I’ve attended all eight national amputee conferences since 2004 and have made amputee friends from around the world at them. Some of these friends and I have formed a very strong bond, and we keep in touch through e-mail, online forums, social media and the telephone. We look forward to each upcoming conference when we can see each other and catch up on our happenings. Many of us also meet between conferences at other august/september 2012 Amp it up! magazine

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amputee events we attend. One year, a group of us were all sitting in “the pit,” which was a bar in the hotel at the Atlanta conference. We had spent a long day in sessions and in the exhibit hall. There were also a couple of spouses in attendance, and one of them suddenly made an observation: All four or five of the amputees sitting there had taken off our legs as we relaxed with our drinks. It’s those funny things you share with others like you that make an impact. None of us were uncomfortable taking off our legs, and we didn’t even notice that the others had done it. A goal of most amputees is to get back to as normal a life as possible. We want to do the things we used to do and also try new things. There is nothing like doing these things with other amputees. They are our best cheering section, but they can also be a pain in the neck - in a good way - as they push us to do more. They understand how difficult it is for us to do what some people might think is a simple task, but they also know how much more we should be able to do. Many of the events where amputees can participate in activities they used to do or in new activities are made possible through organizations that have been established to provide specialized training in sports and recreational activities. OPAF and the First Clinics is one of these organizations. This organization provides a wide variety of sports and recreational clinics, and it brought a swimming clinic, a tennis clinic, and a climbing wall to our last conference. It also offers a host of other so-called “First Clinics,” from dancing to golf. It is easier and less expensive - and sometimes even free - for amputees to participate in such clinics and events. A few years ago, the Amputee Coalition decided to hold it’s national conference every other year instead of every year, with our first skipped year being 2012. Without our conference to bring us together, I thought that a cruise would be an ultimate meeting place. It just happened that one of the presenters at our conference in Kansas City was a travel agent who specializes in accessible travel for people with disabilities. Five of us, including that presenter, had dinner one night at one of Kansas City’s famed barbeque restaurants, and by the next morning, we had a wellthought-out idea for a cruise to take to the Amputee Coalition. After much discussion with the Coalition’s upper management, they decided to endorse the cruise by promoting it on the Coalition’s Web site and through mailers. The Coalition is currently seeking

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sponsors to help make this cruise even more enjoyable for all participants. The cruise is already more than we ever thought possible. At the time of this writing, we have 82 cabins booked for 152 individuals age 6 to 80-something from three countries. In addition to working with the Amputee Coalition to promote the event, we networked the cruise through support groups, e-mails, and a Facebook page that we started for it. None of this would have been possible without networking and the Internet. I try to stay active on various forums, message boards, and Facebook since many of my amputee friends are on Facebook. This allows us to keep in touch with each other and to reach out to others. A new amputee recently contacted me about something I knew little to nothing about, and I was able to put him in touch with someone in the same situation who was able to lead him in the right direction. That is what it’s all about. I know I can’t help everyone with his or her problem, but my network is so vast that I am usually able to call on someone who can help. My life changed dramatically that day in April 2004, but not in the way that I or many others expected. It opened up a whole new world that I never would have experienced if not for my amputation. It has introduced me to people who have inspired me, encouraged me, cried with me, and helped me understand the importance of helping others. I would not take my leg back if it meant losing all of the friends and experiences I’ve gained during the past 8 years. I consider my amputation a little inconvenience compared to the wonderful things I have gained. Networking, meeting other amputees, and sharing our experiences has made all of this possible for me. Without these opportunities, I might still be sitting at home brooding about my life instead of getting out and enjoying it. For those who are interested in networking, our premiere networking event this year will be the cruise. We are cruising the Western Caribbean for 5 days with two stops, Jamaica and Labadee Island, from December 3-8. We will be cruising on Royal Caribbean’s Liberty of the Seas. You can call Debra Kerper at Easy Access Travel for more information. 800 920-8989. Neal Seigfried has been a left below-knee amputee since April 2004. He has been a self-employed entrepreneur for 35 years. Neal is active with his local support group and is a peer visitor.


TM

October 25, 2012 - Athletes with Disabilities Hall of Fame Induction Ceremony

Sound Board at the MotorCity Casino in Detroit, Michigan Recognizing and honoring men and women who have overcome physical challenges to become elite athletes and superior role models.

May/June 2013 - Extremity Games 8

Extreme sports event including competitions, instructional clinics and exhibitions for people with amputations or spinal cord injuries. Extremity Games’ competitions and instructional clinics help people recognize their own personal endurance, strength and achievement, while offering an opportunity for individuals to have camaraderie with others facing the same challenges.

Athletes with Disabilities Network’s mission

To promote a better quality of life for people with physical disabilities by creating awareness and offering opportunities to get involved with athletic, recreational and educational activities nationwide.

248.829.8353 www.adnpage.org | www.extremitygames.com facebook/adnpage | facebook/extremitygames


BY AMP IT UP! STAFF

Making a difference

Changing lives every day through peer mentoring

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rowing up with a hook for an arm can have a tremendous impact on a child’s life. Just ask Carrie Davis. Davis, who was born without a left arm below the elbow, wore a cable-operated hook prosthesis until she was 17 years old. “I stood out everywhere I went,” she says. “People made all kinds of assumptions about what I was capable of before they even knew me, even wondering whether I was cognitively all right upstairs since they saw a hook hanging out of my shirtsleeve. So I know what that feels like.” It was an extremely difficult and sometimes humiliating period in Davis’ life, and it’s that type of experience she wants to help other amputees avoid or at least deal with in a positive way. Fortunately, her newest job as the national coordinator for Hanger Clinic’s Amputee

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Empowerment Partners Program gives her that opportunity every day. Davis performs several roles in her job: peer mentoring; training other peer mentors; coordinating the peer mentoring program; acting as a volunteer peer mentor for Camp No Limits (www.nolimitsfoundation.org); and co-administering Hanger Clinic’s online amputee network site (EmpoweringAmputees.org). “I was a high-school English teacher and debate coach before this, and I have always been a writer,“ she says, “but this job is all of that. It’s coaching, it’s mentoring, it’s writing, and it’s teaching in a way that I really understand.” Through the mentoring program, she helps thousands of amputees around the country regain their self-esteem and begin living exciting and full lives. “Now I know how good it feels to be on the other side of those anxieties I had as

Amp it up! magazine  august/september 2012

a child, teenager and young adult and to be in a place of power,“ she says excitedly, “and it really feels great to be able to help others get to that place.”

A program for all amputees

Even though Davis is employed by Hanger Clinic, she says that any amputee, whether he or she is a Hanger Clinic patient or not, can request a contact with one of the program’s hundreds of volunteer peer mentors. “Hanger feels that every amputee should have the opportunity to talk to someone else who has gone through an amputation and recovered, whether faceto-face or by phone or on the Internet,” she says. The hundreds of volunteer mentors now participating in the program around the country include males and females;


You have the right to decide how the loss of a limb is going to affect you and how you are going to get through it.

young, middle-aged and older individuals; and amputees with various types of amputations from various causes. When possible, Davis tries to match those who request mentoring with mentors who have something in common with them. “Even though it’s inspiring to meet someone who lost a leg in a motorcycle accident and who is running marathons, that’s not the perfect mentor for an amputee with diabetes or peripheral vascular disease,” she says. “Our goal, and what we’ve been able to achieve, is to have a wide variety of people who are mentors.” Today, Hanger has more than 700 peer mentors around the country who have been trained and about 4,000 members online at EmpoweringAmputees.org. “When someone requests a specific type of peer mentor,“ Davis says, “I can usually arrange someone for them

because I know most of the people in our network, having met and trained them myself. We also have some family members in our network because amputation doesn’t just affect the person with the amputation; it also affects his or her family.”

How it works

The key to mentoring, Davis says, is that it’s one-on-one. “You have a person who has had a very similar experience to yours who can help you and guide you along. He or she can teach you tips and tricks, help you learn to navigate your home after your amputation, or show you how to cook after you lose an arm. Your mentor becomes your go-to person who you can take your questions and concerns to. He or she is your friend, your confidant. It’s all based on your goals and how we can help you achieve them.”

In her role as a mentor, Davis says that she talks to a lot of parents whose children have been born with congenital upper-limb differences since that was her personal experience. “Often, they have been told that their child will develop just fine and doesn’t need a prosthesis. Although it’s true that children can usually learn to do everything with one hand, they must be aware that if they do, they’ll wear out their sound limb more quickly, their muscles on their affected side will atrophy, and their body symmetry will be misaligned. So my function in this situation is to educate the parents about what might happen if their child doesn’t wear a prosthesis. If, however, they still decide to raise their child without a prosthesis, I can teach them some strategies to build their child’s muscles, to protect their sound side, and those kinds of things.”

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Making a difference

Having been born without a left arm below the elbow, Davis has used a prosthesis all of her life and has experience with various types of devices. “I’ve worn passive, activity-specific, myoelectric, etc.,” she says. As a result, she can show patients who are trying to make decisions about prosthetic devices how the various models work. Since some amputees might only be able to get one prosthesis for many years, making the right choice for their situation is essential, she says. “My role is to mentor people and show them their options so that they can make educated decisions,” she says. “I work with a lot of kids, and I teach them how to use a prosthesis. I also teach them that they are not defined by what they are missing but by all of the other aspects of their lives. I teach them that they should not define who they are based on their body image, and I try to instill in them a positive sense of self. It’s not only about prosthetics; it’s also about getting people to embrace who they are and how they came into the world or the set of circumstances that brought them to where they are now rather than embracing fear or substances, which some people do. My whole goal is getting them to accept and embrace their lives. That’s really what mentoring is about.” Devanie Fernandez and Carrie Davis are “Sisters in Arms.” Fernandez lost her arm to cancer, and Davis was her peer mentor. The two recently worked together with three new pediatric patients who received myoelectric arms to teach them how to accomplish Activities of Daily Living and other tasks.

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Embracing their lives

Jen Machetta, one of the girls Davis mentored personally, is a great example. Machetta, like Davis, has been a belowelbow amputee since birth. High school, however, was an especially difficult period for her, as she found herself struggling with accepting her physical appearance. “I was the only person in my school that wore a myoelectric prosthesis,” she says. “I needed help so my mom asked my prosthetist (Bob Picken) to see if there was anyone out there that could help me get my self-confidence back. Bob advised that I speak with Carrie Davis.” When Machetta first met Davis, Machetta had not worn a short-sleeved shirt in nearly two years.

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“Even on the hottest of days,” Machetta says, “I was determined not to have my prosthetic arm show. When I told Carrie about my extremely self-conscious dilemma, she introduced to me her ‘fake it to make it’ strategy. The strategy consisted of me changing my state of mind and just pretending that I was entirely confident in myself. Carrie told me that after a while, I would start to believe it and then I would be truly happy with my appearance. If I stopped portraying myself as having something wrong with me, people would see that I am different but that I am OK with it. They would be more comfortable with me, and I would be more comfortable with myself.” Davis and Machetta then arranged certain days, depending on the weather, when Machetta would wear gradually shorter sleeves until she was finally ready to show her full prosthesis. “On the mornings that we had planned to jump each hurdle, Carrie was always there with an encouraging text reminder,” Machetta says. “Then, right after school, I would text her all about my day. My favorite part of this process was calling her and telling her about my first day of wearing short sleeves to school in two years. I remember being happy that I was going to get out of my long-sleeved rut, but I was really scared.” Peer mentoring changed her life, Machetta says. “Without Carrie’s help, I definitely would not be sitting here today with a short-sleeved shirt on.” Still, there was more to the mentoring than just helping a young girl wear short sleeves again. “Carrie has also encouraged me to never let my mindset inhibit what I want to do,” Machetta says. “She even invited me to participate in a program for prosthetic professionals where I could share my story. I never thought I could tell others about my personal struggle, but it actually felt good. Hopefully, I was able to help others and give back a little of what Carrie gave me. Life is better, and I feel freer now that I have accepted my difference – thanks to Carrie’s support!”


The goal is really just to let people know that they have the power in this, Davis says. “They have the power to make a choice. They have the power to go to bat with their insurance companies. They have the power to have their voice heard. They have the power to choose their prosthetist and their rehab facility. You’re at the most vulnerable place in your life when you lose a limb and you’re kind of shuffled through a system and told this is where to go and this is what you can have, and people need to know that they can empower themselves to make choices in their life. You have the right to decide how the loss of a limb is going to affect you and how you are going to get through it.”

The power of peer mentoring

Linda Rowland had her left leg amputated below the knee 15 years ago. She has been a peer mentor in Hanger Clinic’s network for about a year, and she has a great amount of respect for both the mentoring program and Davis. “This program is so important,” she says. “Doctors can’t speak like an amputee can and tell you what you’re going to be going through. There are so many questions that a doctor can‘t answer. I have

this lady who‘s 63 who calls me once a week, and I‘ve been with her since she had her leg amputated, and she‘s wonderful. She asks me questions, and she just wants to talk to another amputee. It gives them some kind of comfort zone.” It’s an amazing, irreplaceable and empowering program, she says. “Carrie is so amazing, and I can’t wait for the world to get to know her! Everything she does and the many lives that she touches and changes is making the world a little bit of a better place, one limb at a time. I’ve never felt so empowered by somebody as I have by Carrie. She is a tireless advocate and is really good at what she does. She just makes people feel like they can do anything. She definitely has the right job. ” Davis agrees wholeheartedly that this job - or perhaps it would better be termed a calling - fits her better than any she’s ever had. “I absolutely love my job,” she says enthusiastically. “I can’t imagine doing anything else.” To learn more about peer mentoring or to request a mentor, please contact Carrie Davis at 866 355-9911 or cdavis@hanger.com. You may also visit EmpoweringAmputees.org and sign up to network with other amputees.

Quotes From EmpoweringAmputees.org Participants “I am really pleased at how welcome everyone is making me feel. I wish I would have known about you 12 years ago when I was at my worst. It took two years to look down. I still hurt emotionally but it’s not as bad. Now, I feel I will be even better with all of you on my side. Thank you so very much.” - D.A. “Carrie, thanks for the kind words. I’ve been messing around on the site for a few days now, and, wow, I’m amazed at some of the things I’ve seen people doing. Can’t wait to be one of them!” - K.B. “I have enjoyed getting on here this week and checking things out! There is SO much here, so many people, so much information! I can’t wait to learn more and get to know others! Thanks for your help!” - K.C.

For additional peer support resources, see page 17. august/september 2012 Amp it up! magazine

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Physical Therapy

By John Tawfik, PT, DPT, GCS, and Kelly Contreras, PT, GCS, CEEAA

Achieving the best outcomes for you

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lthough amputation is a major surgery, keep in mind that your therapy team is here to help you get through it and achieve the best possible healing and rehabilitation. There are a few important things that will help you heal as quickly as possible, keep potential problems to a minimum, and prepare you to use your new limb. Common complications to be aware of following amputation can include pain, swelling, and loss of range of motion. The primary goals of therapy during the acute phases of healing and before prosthetic training will therefore be to identify and address these impairments.

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Protect Your Limb Following amputation, during day-today activities, many people accidentally bump their residual limb into things and are at increased risk of falling onto the limb. Besides causing pain, this can re-injure the residual limb and delay healing. To help guard against this, you may be fitted with a postoperative protector for your residual limb. These covers are sometimes known as Rigid Removable Dressings (RRD). An RRD, such as a Hanger AmpuShield, will

not only help protect your residual limb but will provide other benefits as well. It will also encourage constant and uniform pressure on your residual limb to reduce swelling, will assist with shaping the limb, and will help keep the rest of your limb flexible. As a key member of your rehabilitation team, your prosthetist will help determine the most appropriate RRD for your specific needs.

Keep Your Joints Flexible One of the most common problems after amputation is tightening of the remaining joints in the arm or leg. For example, people who have a below-knee amputation might develop a loss of motion in their knee and be unable to completely straighten it. This can happen following other types of amputation as well. Patients can develop a tight shoulder if their amputation is above the elbow, a tight elbow if their amputation is below the elbow, and a tight hip if their amputation is above the knee. The human body has a matrix of tissue that is constantly rebuilding itself. If the joint is kept in a shortened position, it will rebuild itself to remain in that position. Once this occurs, it can be very difficult to regain the lost motion, and it can impact the length of time before the prosthetic limb can be fitted. Unfortunately, the positions that are most

comfortable are often the ones that will increase the risk of developing loss of range. Prevention is certainly the best approach for dealing with contractures and will be a major goal of your treatment team. Your therapist will teach you two important things to help prevent loss of range at the joint. First, you will be shown how to position your residual limb when you are resting. For example, if you have a below-knee amputation, you will be instructed to keep your knee in a straightened position as much and as often as you can. If you have an above-knee amputation, you will be encouraged to get out of your chair and onto your stomach several times a day to encourage the hip muscles to stretch. Second, you will be taught specific flexibility and stretching exercises for your residual limb.


ur residual limb after amputation What Can You Expect If a Joint Tightens? The most important thing to remember is that prevention is the best solution. However, if a tight joint does develop, your therapy team will design the best treatment to help you regain your flexibility and progress your rehabilitation so that you can be as independent as possible. Three possible treatment options include diathermy, ultrasound and electrical stimulation.

Diathermy

A machine is used to heat your joint and the surrounding tissues before your joint is stretched. The treatment is comfortable and provides a feeling of warmth. Just as taffy becomes flexible and bendable when heated, your warm tissues will be more easily stretched. During a diathermy treatment, a large drum is placed next to your joint, and energy is passed through the air to your body for 20 minutes.

Ultrasound

A machine is also used to heat your tissues, but it heats a much smaller area than would be heated in a diathermy treatment. This treatment is comfortable and will also provide a warm sensation to the area. During the treatment, a therapist places gel on the treatment area and moves a small cylinder over your skin for anywhere from five to 15 minutes.

Electrical Stimulation

A machine passes gentle and comfortable electric current into your muscles. Adhesive pads are placed on the body part to be treated and are connected to the machine with plasticcoated wires. The electrical current will help remind your muscles how and when to turn on and off resulting in overall relaxation and increased joint motion.

You have experienced a major surgery and your therapy team understands that. It may take you some time to mentally and emotionally adjust to losing your limb. A well-designed therapy program will help you heal more quickly and avoid complications. Protecting your residual limb, properly positioning your residual limb, and doing your stretching exercises frequently are essential to your successful rehabilitation. Without question, they will play a huge role in your recovery. Success with these aspects of your rehabilitation will help you achieve the best outcomes and reach your highest potential so that you can pursue all of the activities that you enjoy and maybe even some new ones!

John Tawfik, PT, DPT, GCS, is a regional manager of training and customer satisfaction at Accelerated Care Plus. John is a geriatric board-certified specialist, and his areas of clinical interest include evidence-based practice, healthcare

Muscle Spasms and Phantom Pain Occasionally, following amputation, patients experience muscle spasms. Left untreated, these muscle spasms can restrict your ability or willingness to properly position and stretch your residual limb. Another common problem is pain in the part of the body that has been amputated, known as phantom pain. It

might take some time for your brain to learn that your amputated body part is no longer there. This can confuse your brain, leading to phantom pain. Diathermy, ultrasound and electrical stimulation treatments can also be used to increase circulation to your muscles, helping them relax and reduce your pain.

policy, and professional/patient advocacy. Kelly Contreras, PT, GCS, CEEAA, is the regional manager of training and customer satisfaction at Accelerated Care Plus in the New England area. She is a geriatric board-certified specialist with 16 years of experience. Kelly is also a certified exercise expert for aging adults.

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Occupational Therapy BY TIFFANY RYAN, MOT, OTR, CSCS

Upper-limb amputees gain skills and independence from specialized rehabilitation

all photos courtesy of ADVANCED ARM DYNAMICS

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iving with an upper-limb difference or experiencing an upper-limb amputation requires developing unique approaches to both the small and large tasks that life presents each day. Consider the intricacy of the human hand and the multitude of movements and grips it performs, and it’s clear that upper-limb patients have very specific rehabilitation needs. Working with a prosthetist and an occupational therapist who specialize exclusively in upper-limb patients and their rehabilitation can improve your abilities and increase your independence. Truly successful rehabilitation is the result of a comprehensive team of healthcare professionals working in partnership with you and your family. The team will include the physician, nurse, social worker, therapist and prosthetist. Ideally, there will also be a representative from the company that manufactures the prosthetic components and other professionals who address issues such as emotional concerns, social adjustment and integration, and nutrition and physical fitness. It is important to understand that the vast majority of amputations involve a lower limb, with less than 10 percent of all amputations or limb differences involving an upper limb. So while most occupational therapists may have worked with other amputees, they are likely to have been lower-limb patients. Occupational therapists specializing in upper-limb prosthetic rehabilitation concentrate on developing individualized treatment plans that are specific to your level of limb loss and your goals in terms of lifestyle and activities. These specialists are acutely aware of the psychological, social, physical and functional issues you may be experiencing. The effects of upper-limb loss often amplify these issues and require specialized

Occupational therapist Tiffany Ryan works with Ric Valdez to identify sensor sites for a myoelectric prosthesis.

intervention. While a therapist specializing in upperlimb prosthetics may connect with an upper-limb patient at any point in the recovery process, it is most advantageous when he or she becomes involved during the earliest stages of medical care. Unfortunately, upper-limb patients are often not given the opportunity to work with an occupational therapist in the early stages of recovery or don’t understand the important role a therapist can play. The range of issues a therapist is trained to address include wound care, scar management, orthopedic disturbances, overuse of the sound limb, ergonomic adaptations, functional-activity training, patient and family education, and training to prepare patients to use a prosthetic device. Therapists also serve as patient advocates throughout the continuum of care and provide prosthetic training when patients begin wearing a prosthesis.

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Emotional well-being, social concerns, residual-limb changes, and other physical issues fluctuate throughout the healing process and are addressed at all stages of treatment and rehabilitation. Some of the challenges patients might face include dealing with the traumatic nature of the loss, the need for a comprehensive team approach, and limited access to medical professionals who are knowledgeable in caring for this relatively small patient population.

More Independence

Bruce Burris became a bilateral partialhand amputee in 2007 when he lost all eight fingers in an on-the-job accident. He did not see an occupational therapist or attempt to wear a prosthesis until almost a year after his injury. By then, he had figured out how to do many things with his residual hands and thumbs and had also become more reliant on other


Unfortunately, upper-limb patients are often not given the opportunity to work with an occupational therapist in the early stages of recovery or don’t understand the important role a therapist can play. participating in beta testing and trials on new electric fingers. “The advantage of getting early prosthetic care and therapy is that you’re learning how to do things one time instead of two times,” says Bruce. “The sooner you can get a prosthesis on, the better off you’ll be.”

Gone Fishing

Fishing is just one of the things that Carlos Porras does well. He also likes to salsa dance, play softball, and, lately, he’s gotten pretty good at changing his son’s diapers. Two years ago, after losing his hand in an accident at work, Carlos experienced almost constant pain due to a neuroma in his residual limb. He was unable to return to work or move forward with using a prosthesis, which left him fighting depression. After being evaluated by an upperlimb prosthetist and occupational therapist, revision surgery was recommended. Once he recovered from the surgery, Carlos began moving steadily through prosthetic fitting and concurrent occupational therapy, where one of his early repetitive tasks was using both hands to fold towels into perfect squares. He selected this as a training task so that he could achieve

Bilateral amputees have more function when wearing at least one prosthesis, such as these body-powered M-Fingers.

people to assist him. With the help of an upper-limb prosthetist and occupational therapist, Bruce has since been able to try mechanical, electric and activity-specific prostheses. By wearing mechanical fingers on one side, he is able to pick up a bottle of water, grasp a toothbrush and carry smaller items, all of which increase his independence. An activity-specific device that is shaped like a curved C enables him to hold heavier items like a weed eater and grasp other tools he uses to take care of his home. Both types of prostheses enable Bruce to hold objects in a natural and balanced way that reduces the strain on his thumb, wrist, elbow and shoulder. In addition to improving his ability to use his hands and be more independent, trying various prostheses has also had an important psychological effect. For the first time since his accident, Bruce experienced the gratification of helping other people by

An activity-specific device enables Bruce to grasp handles and hold tools.

Carlos is able to tie a lure onto his fishing line with the help of a myoelectric hand with articulating fingers.

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avid baseball and softball player. He discovered running in his early 30s but never dreamed he’d be able to go very far with his weakened left leg. He finished his first half marathon in 2:30:00, and with training, trimmed a full 25 minutes off his time. “By then, I was totally hooked on running,” says Ric. “It was a good stress reliever, and it felt great to be successful at something so athletically demanding after my injury.” From a prosthetic and therapy standpoint, amputation at the shoulder involves a longer and more complex rehabilitation process. In Ric’s case, there were burns and scar tissue that had to be managed on his shoulder and his leg. His initial prosthesis was a body-powered arm, and later, he was fit with a myoelectric arm, relying on Using an upper-limb prosthesis to work outside is a goal for many people.

his goal of being able to efficiently do his laundry and fold and hang up his clothes. Over the past six months, his activity level and confidence have increased significantly, and he has been able to use his prosthesis to fish and play softball. Recently, he spent an afternoon participating in a motion study with his occupational therapist and mentoring a new amputee who had just received an upper-limb prosthesis. Over the course of two years, his challenging yet successful rehabilitation brought him to the place where he was able to offer guidance and support to one of his peers. “I really enjoyed participating in the motion study,” says Carlos. “It’s been a long time since I have felt the emotional rewards of helping others.”

all photos courtesy of ADVANCED ARM DYNAMICS

Marathon Man

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Ric Valdez never really pictured himself as a runner. But at age 56, he has completed the White Rock Marathon in Dallas five years in a row, and this year, he’s training for the Cowtown Ultra Marathon in Fort Worth - a grueling 31-mile run that is set for February. Ric was just 24 years old when he became a shoulder disarticulation amputee after being electrocuted while working as a lineman for a power company. In addition to the amputation of his left arm, he lost the majority of the quadriceps in his left leg, and his left ankle had to be fused. He’d been very athletic before the accident and was an

Marathon runner Ric Valdez wears a body-powered prosthesis to improve his balance when running and working out.

therapy and prosthetic training to learn to effectively control the electric elbow, wrist and hand. Like many upper-limb patients, Ric wears his myoelectric during the day when he goes to work and favors a more rugged body-powered arm for working in his yard and playing outside with his grandkids. Besides increasing Ric’s abilities and independence, wearing a prosthesis has been important in balancing his body and helping him maintain proper alignment of his neck and back. Balance is a key factor in running, and Ric wears an older, bodypowered prosthesis during marathons

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and on his training runs every other day. He says that a prosthesis also gives him a kind of psychological balance because his body feels physically complete. Ric’s successful rehabilitation led him to work with his occupational therapist to develop exercise techniques and teaching materials that other therapists can use with their patients who are amputees.

Living Full Lives

Bruce, Carlos and Ric are good examples of how occupational therapy plays a key role in rehabilitating to an active and productive lifestyle. Occupational therapists who work exclusively with people with upper-limb loss or absence offer a wide array of techniques for overcoming most of the challenges of daily living. Their expertise extends far beyond the walls of a therapy room to help enable both simple and elaborate modifications that can be made to your home, workplace or vehicle - modifications that make life better. And perhaps most importantly, through their specialized work, therapists seek to strengthen your sense of satisfaction and accomplishment in life. Their cumulative experience with previous patients deepens their clinical knowledge base and is an asset they can share with every new patient. Therapists devise and implement a comprehensive plan that is specific to you and refine the plan as rehabilitation unfolds, meeting goals and setting new ones. The upper-limb patients I have worked with appreciate the opportunity to share their problem-solving skills and their feelings about the challenges they face with each other. Bilateral upper-limb patients are particularly adept at working together to find solid solutions to challenges in selfcare and work that are unique to them. As a specialist in upper-limb occupational therapy, it is a privilege to facilitate these interactions between patients and to work in partnership with them through the ups and downs of their physical and emotional recovery. Tiffany Ryan, MOT, OTR/L, is national director of therapeutic services for Advanced Arm Dynamics (AAD), a leading provider of comprehensive upper-extremity prosthetic rehabilitation. Under her direction, therapeutic services are integrated into each patient’s rehabilitation process. She has 15 years of professional experience.


Upcoming Events Athletes with Disabilities Network (ADN) October 25 Athletes with Disabilities Hall of Fame Induction Ceremony Sound Board at the MotorCity Casino in Detroit, Michigan

Camp No Limits November 15-18 Florida For more information: www.nolimitsfoundation.org campnolimits@yahoo.com 207 240-5762

May/June 2013 Extremity Games 8 For more information: www.adnpage.org www.extremitygames.com 248 829-8353

Orthotic and Prosthetic Activities Foundation (OPAF) November 10 First Swim San Antonio, Texas December 15 First Volley Palm Desert, California January 12, 2013 First Climb and First Swim Phoenix, Arizona For more information: www.OPAFonline.org info@OPAFonline.org 319 235-4318

Be sure to verify event dates with the hosting organization to make sure that they have not been cancelled or rescheduled.

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Bob Radocy

PERFORMANCE ✔ SPEED ✔ STRENGTH ✔ QUALITY ✔ RELIABILITY ✔

Body Power vs Bionic . . . There is no contest!

. . . exceeding the challenge. 800.279.1865 www.oandp.com/trs august/september 2012 Amp it up! magazine

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Tell your friends, family members, and other amputees about these informative publications today! AmputeeNews.com

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Amp it up! magazine  august/september 2012

Amp It Up! Vol. 1 Issue 3  

The Health & Lifestyle Magazine for Amputees Who Want to Live More Fully