“Mr. Westover, your surgery has been scheduled for May 13, 2004,” said the voice on the other end of the phone.
That gave me six weeks to prepare. Prepare? How do you prepare for a below-elbow amputation? I'd had almost a year to think about it, but now it was here. I had talked the talk, and now it was time to walk the walk. I wanted information. The more I knew, I thought, the less chance my fears would run rampant and the better I could help my family cope.
The Arm-Amp List Serve
While I was looking for information and support, the first web site that caught my eye was the Arm-Amp list serve. This list serve is a message board for a community of upper limb amputees and their family members, friends, prosthetists, and therapists from all over the world.
The Arm-Amp Web Site and list serve were the "vision" of Bill Baughn, who founded them in 1996 hoping to bring information to arm amputees around the world. Bills wife, Joyce, is a bilateral below-elbow amputee as a result of being hit by a train when she was six years old. Bill also founded I-CAN (International Child Amputee Network, www.child-amputee.net) in 1995 specifically for the parents of children with limb differences.
"I saw my primary role as support for Bill, to follow where he led --- and I never went wrong doing that," Joyce explains. "As I read I-CAN and began attending the yearly meetings, getting acquainted with parents and children, I realized that I can contribute to some of their lives. I don't see myself as 'special' but some people do, and that allows me to help them. Maybe that is what I was put here to do."
After Bill's death in March 2004, Joyce began running the list serves.
Bigger and Better
In the past few months, the Arm-Amp Web site has been transformed and now includes links for arm amputees to products, services, and information related to the issues they face every day. There is a Members' Bios section, where they can meet some of the members and earn their stories and triumphs. In addition, there is a real-time chat room where, two times a week, participants can get together and discuss amputee issues, do some problem-solving, and chat with new arm amputees and their families and friends. There are currently 156 members from almost every state in the U.S. and numerous countries around the word, including China, Australia, Sri Lanka, Europe, and Canada.
From The Mouths of the Members
Recently, I asked for some feedback and thoughts about the Arm-Amp list serve. Here are a few of the responses: Toni S, a congenital below-elbow amputee from Portland, Oregon: "The list has been my link to people just like me. My favorite memory has to be the overwhelming notes of encouragement I got when I was struggling with some self-esteem issues prior to my trip to Cancun."
Al K, a below-elbow amputee as a result of gunshot wounds in 1967, from Foothill Ranch, California: "A great information exchange among an elite group of people. Since there aren't very many of us, this is our only way to meet and discuss common issues. It means a great deal."
Jan J, a below-elbow amputee due to heart attack and blood clot in 2002, from Tulsa, Oklahoma: "I love the Arm-Amp message board and chat sessions... I always get several suggestions to my problem. I love having a place to go where others know exactly what I am going through."
The Tip of the Iceberg
In addition to Arm-Amp.com and I-CAN, there are numerous other resources available to upper-limb amputees. I found the Amputee Coalition of America (ACA) on the Web doing some research before my surgery and e-mailed a request form to be contacted. Less than an hour after I sent it, I received a phone call from a bilateral Superset amputee from the ACA. For the next two hours, he spoke with me about his experience as an amputee and also listened to my story and offered his advice, support, concern, and, most of all, his friendship. He also gave me his personal cell phone number and told me to call if I needed anything. I can't tell you how much that one phone call meant to me. He also sent out a packet of information and followed up with me to see how I was doing. Since that time, we've been in contact by phone or e-mail pretty regularly. That was how I was introduced to the ACA, and it was a GREAT first impression.
I know it might seem as if there are few resources available for upper-limb amputees in comparison to what is available for lower-limb amputees, but I hope this will encourage and empower each of you to seek out what is available.
I also encourage all upper-limb amputees to join the Arm-Amp list serve (www.arm-amp.com) and become part of a wonderful “family” that encourages and supports each other and understands the issues that we all face on a daily basis.
Additional Resources
The following Web resources offer tips for doing a variety of tasks with an upper-limb amputation, provide information on products and technology that might be useful to arm amputees, and tell the stories of others who have learned to live with an upper-limb difference in a two-handed world.
Web Sites:
Barn Builder: A Peer Support Network of Farmers With Disabilities and Caregivers
(http://pasture.ecn.purdue.edu/~bng/barn/by-disability.html)
Farming with an Arm Amputation
(www.agrabilityproject.org/assistivetech/tips/2_arm_amputation.cfm)
Handy Gadgets For One-Handers
(www.usinter.net/wasa/handy.html)
How To Type With One Hand
(www.aboutonehandtyping.com/howto.html)
Linda's One-Armed Web Site
(www.toysrbob.com/onearm)
One Arm Dove Hunt
(www.onearmdovehunt.com)
surviving limb loss: Arm Amputation
(www.survivinglimbloss.org/arm_information.html)
Tips 4 Arm Amps
(http://loricase.com/tips4arm-amps)
Upper Ex
(www.upperex.com)
ACA Articles on the Web
“Assistive Devices Give Upper-Extremity Amputees a Helping Hand.”
www.amputee-coalition.org/first_step/firststepv2_s1a14.html
“Enhancing Your Comfort and Function Through Upper-Extremity Socket Technology.” Farnsworth, Troy, CP, FAAOP. www.amputee-coalition.org/inmotion/nov_dec_04/sockettech.html
“Overcoming Limitations of the Mind.”
www.amputee-coalition.org/inmotion/jan_feb_04/limitations.html
“Surviving in a Two-Handed World.”
www.amputee-coalition.org/inmotion/jul_aug_01/world.html
“Technology and the Human Hand.”
www.amputee-coalition.org/inmotion/nov_dec_02/handl.html
“The Wonderful World of Cosmesis.”
www.amputee-coalition.org/inmotion/mar_apr_02/cosmesis.html
“Upper-Extremity Limb Fitting.” Stark, Gerald, BSME, CP, FAAOP.
www.amputee-coalition.org/inmotion/jul_aug_01/primer.html
Tips for Upper-Limb Amputees
Do you have a trick or technique for doing something that makes your life as an upper-limb amputee easier? If so, why not share it with others? E-mail your tip to Eric Westover at ghtmann@comcast.net. Don't forget to include your name and amputation level. I'll then share some of them in future issues of inMotion and/or FirstStep for all of us to see.
About the Author
Eric Westover is a right below-elbow amputee. He lives in New Hope, Minnesota, a suburb of Minneapolis. He is an active member of NASO (Northstar Amputee Support and Outreach), a member of the ACA, and a member and chat moderator of Arm-Amp.com. He is also an avid outdoorsman, plays golf, hockey and soccer, and is drummer and lead singer in The Rebel Heart Band.
