Living with Limb Loss or Limb Difference: Overcoming Mental Roadblocks

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You are in your 20s, exhilarated as you zoom down the highway on your motorcycle with the wind in your face. Then, in what seems like the next moment, you wake up in a hospital, missing a leg. You are a 75-year-old with severe vascular disease, also waking up in a hospital missing a leg, but you saw this day coming. Several efforts to save your limb failed; amputation was necessary. You are an 11-year-old girl with congenital limb deficiency. You feel yourself to be different from your family and friends.

Persons with amputation or congenital limb difference come in all ages and life circumstances. Each person has his or her own practical, everyday life challenges in learning how to use a prosthesis (if a prosthesis wearer), mastering activities of daily living (ADL), and staying fit and active by engaging in sports and recreational activities. Having satisfying personal relationships and a sense of job satisfaction are vital concerns as well. But looming in front of each person may be roadblocks-psychological, emotional, and social issues to overcome for a successful life with amputation.

These issues can be huge and are important for prosthetists and patients alike.

"A positive person who says, 'I'm going to get up; I'm going to do great,' will do well because he is so motivated," says Jerry Scandiffio, CP, Next Step Orthotics & Prosthetics, Newton, New Hampshire, who is a transtibial amputee. "Having positive family and friends who are encouraging is very important."

Charlie Steele

"Rehabilitation after amputation is fundamentally dependent on the patient's psychological adjustment to the injury; hence, practitioners' sensitivity to psychosocial issues has clear practical implications both for successful prosthetic fitting and rehabilitation, and for continuing development and innovation in the discipline," observes Deirdre Desmond, BA (Mod), and Malcolm MacLachlan, PhD, DipBus, FPSI, FTCD, in their paper, "Psychosocial Issues in the Field of Prosthetics and Orthotics," (Journal of Prosthetics and Orthotics, Vol. 14, Number 1, 2002.)

"Although professional practice in prosthetics and orthotics may not necessitate an in-depth knowledge of the complexity and diversity of associated psychological disorders, professionals should be aware of the psychological issues that may influence the rehabilitation of their patients," the authors point out. Difficulties in adjustment are typically associated with reports of depression, grief, feelings of hopelessness, low self-esteem, fatigue, anxiety, social isolation, and, sometimes, suicidal thoughts. Related problems may include maladaptive coping behaviors, such as drug and alcohol abuse, greater disability, poorer social functioning, and loss of functional independence.

What Can Help?

When possible, contact with rehabilitation services before amputation surgery can be beneficial in providing counseling, information, and advice, and in facilitating the development of realistic rehabilitation goals and expectations, according to Desmond and MacLachlan. "Considerable evidence suggests that appropriate preparation for surgery eases patients' rehabilitation, including the length of time they remain inpatients and the amount of medication they require."

They also point out that specific, structured therapeutic interventions, operating through individual, couple, family, or group therapies, for problems such as depression, anxiety, sexual difficulties, substance addiction or drug overuse, and pain may be needed.

Conference Presentations

Presentations at organizations such as the Amputee Coalition of America (ACA), local and regional support groups, and professional O&P organizations can help both persons with amputations and healthcare professionals better understand psychological issues, as well as with effective intervention and coping strategies.

For instance, Kevin Carroll, MS, CP, FAAOP, vice president of prosthetics, Hanger Prosthetics & Orthotics, Bethesda, Maryland; and Kim Doolan, clinical coordinator at Allen Orthotics & Prosthetics Inc., Midland, Texas, and public relations coordinator at Aesthetic Concerns Prosthetics, Middletown, New York, who has congenital deficiency in three limbs, have presented on the psychological aspects of adapting to amputation at various meetings. Some of their presentations have included research by Elisabeth Kübler-Ross, MD, who wrote a landmark book, On Death and Dying, published in 1969, which identified what is often called the "Grief Cycle."

In following years, it was observed that this emotional cycle was not just exclusive to terminally ill persons but also to others who experience life-changing events often perceived as negative, such as amputation. The grief cycle includes the following stages:

  1. Shock stage: Initial paralysis at hearing the bad news.
  2. Denial stage: Trying to avoid the inevitable.
  3. Anger stage: Frustrated outpouring of bottled-up emotion.
  4. Bargaining stage: Seeking in vain for a way out.
  5. Depression stage: Final realization of the inevitable.
  6. Testing stage: Seeking realistic solutions.
  7. Acceptance stage: Finally finding the way forward.

Amputees often grapple with issues of body image, intimacy, and relationships, notes Charlie Steele, a transtibial amputee who is a member of the ACA board and heads a local support group. To address these issues, the ACA offers separate sessions for men and women at its annual conferences and through professional articles and other information, available by calling the ACA.

Resources

Amputee support groups and prosthetic facilities often can provide resources for those seeking support services. The ACA, one of the largest amputee organizations in the world, provides an abundance of help, and visiting www.amputee-coalition.org can be a first step toward accessing these resources.

In cooperation with the Centers for Disease Control and Prevention (CDC), the ACA operates the National Limb Loss Information Center (NLLIC), which provides comprehensive resources on a variety of topics for persons with limb loss, their families, friends, and healthcare professionals. Many of these resources are available in Spanish. Interestingly, a large percentage of requests for information and help come from amputees' spouses, other family members, and friends, Steele says.

The NLLIC can be found on the web at www.amputee-coalition.org/nllic_about.html; by phoning 888.AMP.KNOW (888.267.5669); or faxing 865.525.7917. The mailing address is: NLLIC, 900 East Hill Ave., Suite 205, Knoxville, TN 37915.

Peer Support

One of the most valuable avenues for adapting to amputation is peer support from fellow amputees-those who have "been there, done that." Prosthetists who are also amputees often are able to do that informally, simply by their example and also by answering questions. Both Scandiffio and Steve Shunn, CP, of Stellar Prosthetics & Orthotics, Pasadena, California, who has an amputation due to proximal femoral focal deficiency (PFFD), note that patients often seem to especially trust them and feel a bond because they realize that both men, being amputees themselves, would understand their issues and would conscientiously translate that into making well-fitting, "just right" prostheses.

Both have been peer visitors. Though Scandiffio says his role as a peer visitor has been relatively informal, he notes that he always mentions the ACA when he visits amputees. Shunn is a peer visitor as a member of the southern-California-based Mutual Amputee Aid Foundation (MAAF), which is affiliated with the ACA.

The ACA's National Peer Network provides help through experienced, well-trained peer volunteers who can offer practical advice and encouragement. ACA board member and Secretary Kathy Spozio, who lost her leg above the knee to osteogenic sarcoma, is a passionate advocate for the value of peer visits. Although osteogenic sarcoma is more frequent with children and teenagers, Spozio's cancer struck in midlife, a time of change and empty-nesting. At first, amputation took a back seat to concerns about her cancer. But when it came to dealing with the emotions of amputation, she found little help, even though she asked medical professionals and found some old videos that dated back to the poodle-skirt era.

"It took me a couple of years before I began to understand the ways my life was changing and how to 'normalize'-get my life back on track and move forward, getting through the tunnel." Even though she had loving support from her husband, family, and friends, "I really needed someone I could identify with, someone who could help me get through this process."

Spozio continues, "My experience of not having a peer visitor made me realize I didn't want to see anyone else go through this. Being trained as a peer visitor and being able to offer this help to others has really made me realize how valuable it is."

Spozio points out that a peer-visitation program benefits prosthetists as well as patients because it takes the load off prosthetists who struggle to find the time to try to help their patients with emotional issues and life changes associated with their amputation. "Given the reality of today's healthcare, physicians, prosthetists, and others simply don't have the time to spend hours helping a patient get through these things." Although prosthetists often call the physician if they feel the patient needs help from a psychologist or social worker, being able to direct the patient to other resources can be helpful as well.

Carroll notes that peer support works best when it is "apples to apples"-connecting an amputee with a peer who has the same level of amputation and is about the same age, and who has dealt with similar issues. For one subset of amputees-those with transpelvectomies (often called hemipelvectomies) and hip disarticulations, who experience many issues unique to their amputation level-Carroll recommends accessing the support network and resources available at hphdhelp.org. The website is the creation of Christina Skoski, MD, a physician and transpelvectomy amputee.

For parents of children with limb loss or limb difference, the ACA now provides a new program in its National Peer Network, the Parent Support Network, notes Steele.

Another peer-visitor program is offered by Hanger Prosthetics & Orthotics-the Amputee Empowerment Partners (AEP) program, which provides peer guidance and support through a formalized, national peer-to-peer support network.

"Historically, Hanger practitioners at many of our patient care centers have introduced new patients to existing patients as a way of providing additional support and encouragement," says AEP National Director Carrie Davis, who has below-elbow congenital limb deficiency. "AEP was established to formalize this process and to ensure our peer visitors are properly trained to provide the best possible support for new amputees." Hanger has currently trained almost 200 AEP peer visitors nationwide and plans to continue training others, according to Davis.

Action Plans for Prosthetists and Patients

Steele has an action plan for prosthetists to help new amputees obtain peer support contact early on-"critical for many people to adapt more quickly to limb loss, especially those who are struggling emotionally," he says.

Steele suggests that prosthetists list-either on single sheets of paper or in a brochure-the names and contact information for local, regional, and national support groups, along with other appropriate resources such as informative websites, amputee golf and other recreation associations, the Department of Motor Vehicles for testing and handicap placards, and information on mass-transit disability fares. These sheets or brochures should be prominently displayed, and office personnel should suggest that patients take a copy with them.

For people with amputations, Steele stresses staying informed about new prosthetic technology and residual limb care; being active and learning the correct ways to exercise; and, for persons with diabetes and other conditions, to learn ways to help save their remaining leg. He urges amputees to stay informed and up-to-date throughout their lives via the web or publications such as the ACA's inMotion magazine.

Overcoming psychological barriers to success is not easy, and it's even more difficult if a person feels that he or she is alone and has no one to turn to for support. For people with amputations, there is no need to struggle in silence. Reaching out and asking for support-or accepting support when it is offered-is perhaps the single most important thing a person with an amputation can do to help get and stay on the path to physical and emotional recovery.

Miki Fairley is a contributing editor for  The O&P EDGE and a freelance writer based in southwest Colorado. She can be contacted via e-mail at