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Adjusting to LossFebruary 2009 People with limb loss have particular information needs. Topic of the Month is a resource guide of information relevant to amputees. Click on the links below to access articles and Web sites directly. Many of the books and videos can be borrowed through Interlibrary Loan. Many more resources can be found by searching our online library. Please feel free to share this resource with those who may find this useful. We also welcome your comments and topic suggestions! Contact us via e-mail at library@amputee-coalition.org. Please also consult topics Peer Support and Stories of Everyday People Amputee Coalition Articles and Fact SheetsAltered States: Our Body Image, Relationships and Sexuality / Sandra Houston. Knoxville, TN: Amputee Coalition, 2005. Article from inMotion, January / February 2006. A psychologist, who is an amputee, discusses how body image and self-perception affects relationships with others, especially intimate relationships. Are You Suffering in Silence? If So, It Could Be Hazardous to Your Health / Terrence P. Sheehan. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, March / April 2006. Many people with limb loss suffer from both emotional pain and physical pain without voicing their feelings and needs. Suffering in silence is often a result of not knowing how to express one's self or feeling that suffering is normal. This is especially true for senior populations who were raised in a time when self-expression was not accepted or encouraged. This article talks about dealing with your emotions and pain head-on, and how to get help. Bridging the Gap Between Venus & Mars / Charlene Whelan. Knoxville, TN : Amputee Coalition, 2007. Article from inMotion, May / June 2007. Stereotypes, historical perspective, psychology and present trends are discussed in this article that looks at how men and women react to illness, emotion and sense of self. Congenital Limb Deficiencies and Acquired Amputations in Childhood, Part 2: Emotional Response and Early Management / Douglas G. Smith, MD. Knoxville, TN: Amputee Coalition of America, 2006. Article from inMotion, March/April 2006. Part 2 of this series on children with limb differences discusses emotional factors for parents and children, conflicts between children and parents, when prostheses are usually recommended, body image, and the challenges that children face when they transition into the adult healthcare system. Coping with Aging and Amputation / Omal Bani Saberi. Knoxville, TN: Amputee Coalition of America, 2004. inMotion, March / April 2004. The author discusses the phases of loss as aging and limb loss occur simultaneously, as well as coping skills. Dealing With Grief and Depression / Omal Bani Saberi. Knoxville, TN: Amputee Coalition of America, 2001. First Step: A Guide for Adapting to Limb Loss, 2001. This article describes signs and symptoms of depression and grief, as well as suggestions for overcoming depression, particularly aimed at the amputee. Feelings / Omal Bani Saberi. Knoxville, TN: Amputee Coalition, 2003. Article from inMotion, November / December 2003. This article focuses on some of the typical feelings and behaviors of mates, spouses, partners, friends and family members of people who have recently gone through limb loss. Getting Appropriate Physical Therapy: How Can It Help Your Recovery? / by Scott Waite, MPT. Knoxville, TN: Amputee Coalition of America, 2006. Article from inMotion, September / October 2006. Getting appropriate physical therapy from the right therapist at the right time and in the right amount can aid in the physical and emotional recovery for an amputee. Going Public: Overcoming the Emotional Barriers That Keep You Inside / Warren Sumners. Knoxville, TN: Amputee Coalition, 2005. Article from inMotion, March / April 2005. This article looks at the reasons why amputees can find it difficult to go out in public shortly after their amputation. Often, the reasons are emotional. The author tells his personal story about going back into the world. Introduction to the Amputee Coalition's National Peer Network: Providing Emotional Support and Information Essential for Recovery / Patricia J. Isenberg. Knoxville, TN: Amputee Coalition, 2007. Article from inMotion, October 2007. The Amputee Coalition of America's National Peer Network (NPN) offers support and information to amputees and parents of children with limb differences. NPN's goal is to help people with their recovery. This article outlines many NPN programs and activities. It's All My Fault: Strategies for Surviving Accidental Limb Loss in Families / by Sandra Houston. Knoxville, TN: Amputee Coalition, 2008. Article from inMotion, May / June 2008. When a family member loses a limb through an accident, especially if the accident is caused by another family member, the emotional consequences can be disastrous. Examples of this include farming, boating, machine and lawn-mowing accidents. At the same time that the amputee is adjusting to the consequences, the person responsible for the limb loss feels a tremendous sense of guilt and responsibility. Carrying this much self-blame and other negative emotions can take its toll on the entire family, including the victim. Living With a Limb Difference: 8 Keys to Success / Anne Street. Knoxville, TN: Amputee Coalition, 2005. Article from inMotion, September / October 2005. This article explains 8 tips that have proven to be beneficial to new amputees on their road to recovery. Some of the tips include, talking to healthcare providers, establishing goals, having good habits and joining a support group. NLLIC Amputee Coalition Fact Sheet: Peer Support for Children and Parents / Amputee Coalition Staff. Knoxville, TN: Amputee Coalition. This fact sheet discusses peer visitation and resources for parents and children. Peers can help new amputees adjust to a new life by sharing information, offering emotional and practical support and serving as models of success. Peer support is especially helpful to young people. NLLIC Amputee Coalition Fact Sheet: Online Communication Resources for Those With Limb Loss / National Limb Loss Information Center Staff. Knoxville, TN: Amputee Coalition. Resources for amputees or family members of amputees who would like to communicate with other amputees via Internet bulletin boards or e-mail lists. NLLIC / Amputee Coalition Fact Sheet: Resources for Seniors With Limb Differences and Their Caregivers / NLLIC Staff. Knoxville, TN: Amputee Coalition, 2008. This fact sheet lists contact information for a variety of service organizations on aging, medical and prescription drugs, caregiving, and disabilities for seniors and caregivers. NLLIC / Amputee Coalition Fact Sheet: Resources to Help Children Understand Limb Loss / Molly Moore. Knoxville, TN: Amputee Coalition of America, 2009. Reading books about limb difference is a safe and familiar way to introduce children to the topic and help them adjust to amputation. This fact sheet summarizes a variety of storybooks, printable coloring pages and other resources that address limb loss. Books feature children, adults and animals with amputations, and can be useful for easing fears that children often have about upcoming medical procedures or recovery for themselves, their friends or an adult in their life. Learning curriculum and articles for adults are also included. The Power of Peers / Becky Bruce. Knoxville, TN: Amputee Coalition, 2003. Article from First Step: A Guide for Adapting to Limb Loss, volume 3, 2003. This article looks at the importance of peers in providing guidance and emotional support when faced with an amputation. The Psychological Aspects of Amputation / Saul Morris. Knoxville, TN: Amputee Coalition, 2003. Article from First Step: A Guide for Adapting to Limb Loss, volume 3, 2003. This article discusses the psychological part of the amputee rehabilitation process. This includes the 5 stages of the grieving process: denial, anger, bargaining, depression, acceptance and hope, as well as other emotional aspects. The Strength to Carry On: Amputees Share Their Secrets of Success / Rick Bowers. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, September / October 2006. This article highlights people who share their experiences as new amputees. Includes a section on journaling ‑ a common practice used while adjusting to limb loss. Survival Perspectives: What Are Some of the Main Ingredients for Success? / Rick Bowers. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, May / June 2006. Short quotes from amputees and people who have had extensive experience with limb loss tell readers what enables amputees to survive the loss, rebuild their lives and enjoy life. The Team Approach to Amputee Rehabilitation / Rick Bowers. Knoxville, TN: Amputee Coalition, 2003. Article from First Step: A Guide for Adapting to Limb Loss, volume 3, 2003. This article looks at the importance of being actively involved in your post-amputation care. A "team" approach is discussed. When a Parent Loses a Limb: Helping Children Cope / Pat Isenberg. Knoxville, TN: Amputee Coalition, 2001. Article from inMotion, May / June 2001. A list of tips on how to help a child adjust to a parent with limb loss. Amputee Coalition Publications That Focus on AdjustmentFirst Step: A Guide for Adapting to Limb Loss. A publication of the National Limb Loss Information Center. Knoxville, TN: Amputee Coalition, 2005. This is the essential guide for all people who are coping with the challenges of limb loss. First Step offers readers reliable information on consumer issues that have been raised time and time again by amputees attempting to make educated choices, get better services or decide on available options. Also available in Spanish. inMotion. A publication of the Amputee Coalition of America. Knoxville, TN: Amputee Coalition. inMotion is published 7 times a year for amputees, caregivers and healthcare professionals, providing timely and important information on a wide variety of topics. BooksChallenged by Amputation: Embracing a New Life / Carol S. Wallace. Carmichael, CA: Inclusion Concepts, c1995. Helpful information is given to amputees and their families about how to adjust physically, emotionally and socially to their loss. Coping With Limb Loss / Ellen Winchell. Garden City Park, N.Y.: Avery Pub. Group, c1995. ISBN 0-89529-646-2. Written by an emotional recovery counselor, this is a good book for anyone who has undergone an amputation. It gives practical advice on how to work with doctors and cope with the physical and emotional issues following an amputation. Coping With Physical Loss and Disability: A Workbook / by Rick Ritter; additional illustrations by Tyler Mills. 1st ed. Ann Arbor, MI: Loving Healing Press, 2006. ISBN 1-932690-18-2. This workbook provides more than 50 questions and exercises designed to empower those with physical loss and disability to better accept their ongoing processes of loss and recovery. It's Just a Matter of Balance / Kevin S. Garrison. South Euclid, OH: Print Vantage; c2005. ISBN 0-9773261-0-1. As an amputee and as a prosthetist, Kevin Garrison shares his story and perspective on triumphing over disability and embracing life. Life on Wheels: For the Active Wheelchair User / Gary Karp. Beijing; Sebastopol, CA : O'Reilly, c1999. ISBN: 1-56592-253-0. This book covers many issues that come up when becoming a wheelchair user. The topics include rehabilitation, medical concerns, staying healthy, the experience of disability, wheelchair selection, home access, intimacy, sex and babies, politics and legislation and getting out there (sports and such). While written by someone with a spinal cord injury, the book is applicable to others using a wheelchair. The book also includes resources and a very good bibliography. Lower Limb Amputation: A Guide to Living a Quality Life / Adrian Cristian. New York: Demos Medical Pub., c2006. ISBN 1-932603-24-7. This resource, by the Chief of the Department of Rehabilitation Medicine and the Amputee Care Program at the Bronx Veterans Affairs Medical Center, takes a practical approach to help those affected by limb loss to cope emotionally, prevent additional amputations, take care of post-surgery wounds, select appropriate prostheses and more. Pre- and Post-Operative Services for the Amputee With Diabetes: What the Health Care Provider Needs to Know to Prepare and Care for Amputee Patients / Sander Nassan, editor. Alexandria, Va.: American Diabetes Association, c2007. ISBN 978-1-58040-266-8. This book for healthcare professionals is a tool to help patients facing and recovering from amputation due to diabetes complications. It will guide healthcare professionals in identifying the needs of the amputee, prescribing physical therapy, identifying a patient’s learning style, would-healing techniques, and psychosocial implications of the operation. What to Expect Before and After / Carol S. Wallace. Fair Oaks, CA: Wallace & Associates, 2002. This book provides basic information about what to expect before, during and after amputation surgery. It describes some of the challenges amputees face and the resources that are available to help. Included are helpful lists of different ways to cope with the emotional and physical symptoms of grief. PubMedBeing Like Everybody Else: The Personal Meanings of Being a Prosthesis User / CDMurray. Citation to article: Disability and Rehabilitation, 2008 Nov 22:1-9. Coping, Affective Distress, and Psychosocial Adjustment Among People With Traumatic Upper Limb Amputations /by DM Desmond. England: Pergamon Press, 2007. Citation to article: Journal of Psychosomatic Research 2007 Jan;62(1):15-21. Other Amputees Are the Greatest Help in Dealing With Limb Loss / N Page and J Rowe. Pain and Psychosocial Adjustment to Lower Limb Amputation Amongst Prosthesis Users / D Desmond, P Gallagher, D Henderson-Slater, R Chatfield. Citation to article: Prosthetics and Orthotics International, 2008 Jun;32(2):244-52. Re-defining Self After Limb Loss: A Psychological Perspective / I Grobler. Citation to article: Prosthetics and Orthotics International, 2008 Sep;32(3):337-44. Videos & CD-ROMsJonathon's Story / Interactive Drama Inc. Bethesda, MD: Interactive Drama Inc., 2000. ISBN: 1-892601-17-6. CD-ROM. Jonathon Lee is a musician/composer who has lost both legs below the knee and most of his eyesight due to diabetes. In spite of these disabilities, he runs his own business and lives his life with complete independence. Jonathon responds to your questions about his amputations and recovery and how he has coped. His positive outlook and independent spirit are inspiring. There Is Life After Amputation / Real Life Video Productions. Westland, Mich.: Real Life Video Productions, c2005. DVD. This DVD presents the personal stories of the amputees involved in the amputee support group at Saint Joseph Mercy Hospital in Ann Arbor, Michigan. The group discusses coping, peer support, family involvement, goals, challenges, hobbies, interests, laughter and support groups. For family members, caregivers and anyone who has experienced or is anticipating an amputation. Web Sites & OrganizationsAllAboutCounseling.com: Chronic Illness or Disability. This site provides helpful information on counseling and social issues for people with chronic illness or disability. They provide a directory of counseling professionals through which people can narrow the search by state and specialties, such as “Person with Disability.” Amputee Coalition of America. Knoxville, TN: Amputee Coalition. This organization provides a wealth of information to all amputees and their family and healthcare providers. Search the library for more resources on adjustment to loss, call the toll-free hotline for information or to request a peer visit from the National Limb Loss Information Center, or submit a question online. I Will Not Be Broken. Washington DC: Survivor Corps. Are you a survivor? This Web site is based on a book written by a co-founder of Survivor Corps (formerly Landmine Survivors Network). “I Will Not Be Broken” focuses on 5 steps to overcoming a life crisis by putting energy into being a survivor. The Web site enables people to connect with others and share their own story. It also gives tips on how to avoid the victim trap. Mental Health America. Alexandria, VA: Mental Health America. Formerly known as the National Mental Health Association, this national organization provides information about all forms of mental health conditions, including grief and depression. Find referrals to mental health professionals, information about medications and paying for treatment. The site hosts an anonymous forum so that people can connect online. The site also features a depression-screening test. Call the CRISIS HOTLINE at 1-800-273-TALK (8255) if you or a loved one are going through a tough time or are contemplating suicide. |
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