Spinal Cord Injury: A Guide for Living (A Johns Hopkins Press Health Book)

About the Authors: Sara Palmer, Ph.D., is a psychologist and an assistant professor in the Department of Physical Medicine and Rehabilitation, the Johns Hopkins University School of Medicine. Kay Harris Kriegsman, Ph.D., is a psychologist in private practice in Bethesda, Maryland, author of Taking Charge: Teenagers Talk about Life and Physical Disabilities, and a consultant on disability issues. Jeffrey B. Palmer, M.D., is a professor in and director of the Department of Physical Medicine and Rehabilitation, the Johns Hopkins University School of Medicine.

When one member of a family has a spinal cord injury, it has an impact on the life of the whole family. When a parent is injured it means that the uninjured parent, besides dealing with his or her emotional reactions, is loaded with many more responsibilities, especially during the initial hospitalization, and then during rehabilitation. So practically, the family may need to trade roles for awhile or manage basic needs differently, such as, meal preparation or house cleaning. If a child or adolescent is injured, parents may feel overwhelmed but still need to reassure and attend to their other children. Families who can share the trauma story, discuss its effects on the family, reveal their feelings, and talk about what the future may hold, seem to become even stronger, and more cohesive.

2. I know a family where a teenager with a spinal cord injury is treated like the prince of the family. He doesn't have to do household chores like the other kids. Do you think that's fair?

Sometimes families, out of a sense of guilt or sadness, put the person with the spinal cord injury on a pedestal. Family members may feel that they cannot ask for their needs to be met when their "poor" sibling or child has had to suffer. But all members of the family deserve their time in the sunlight, and it's important to ensure that everyone's needs are addressed. Also, it's not helpful for the person with spinal cord injury to avoid chores or other family responsibilities. It's better physically and psychologically to continue activities and responsibilities the teenager had before injury, to whatever extent possible. Some families have been known to assign the task of "keeping the family happy" to the teenager. This is an impossible task, as every individual is responsible for his or her own feelings.

3. What did you learn about how people get on with their lives after spinal cord injury? How do they manage to live independently?

We found that each person had his or her own puzzle to put together. Sometimes it took replacing or eliminating a piece to make life work in a satisfying, rewarding way. The various pieces included accessible housing, transportation, recreation, socialization, travel, and all the other elements they wanted in their lives. Some found this a difficult process with lots of trial and error. However, once they knew how to get what they needed, they went about their lives in normal ways--working, raising kids, going to the movies, maybe playing wheelchair basketball or tennis, flying out to see the Grand Canyon. Aside from their physical and sometimes medical needs, our interviewees' lives and aspirations were almost indistinguishable from their neighbors'.

4. Can a person with a spinal cord injury engage in sex and have children?

Yes! Interest in sex and romance continues after injury. A satisfying sex life is possible, but may require some modifications. Physical sensations during sex might be different, and you may need to try different positions due to changes in strength or mobility. A loving, accepting relationship and the ability to communicate and experiment with your partner are the most important ingredients for a good sex life. Men with spinal cord injury sometimes have reduced fertility, but there are medical procedures that can enable men to father biological children. Women remain fertile after spinal cord injury but may need special care during pregnancy and delivery due to increased risk of various medical problems.

5. I've heard a lot about wheelchair basketball. Are there other sports and recreation for people after spinal cord injury?

There are many opportunities to participate in sports and recreation after a spinal cord injury. Some include wheelchair tennis, racing, rugby ("murderball"), dancing, skiing, horseback riding, weightlifting, and sailing. Traveling, camping, fishing, and hunting are also possible. The way in which you participate in these activities will vary depending on the extent of your injury. But even people with severe spinal cord injuries can participate in many recreational activities with assistance. There are organizations that provide sport and recreation activities specifically for people with disabilities, and these include accessible facilities, adaptive equipment, and assistance as necessary.

6. There are a lot of news stories about research to help repair the spinal cord. What are the most exciting current developments?

Many scientists are working on ways to regrow and reconnect nerve cells in the spinal cord, including stem cell transplants, use of nerve growth promoters, and even intense physical exercise regimens which may help "reprogram" activities such as walking. Some are researching medications which can decrease the nerve damage that occurs immediately after injury. There are exciting advances in the use of functional electrical stimulation (FES) to improve health and fitness and prevent medical complications in people with spinal cord injury. Finally, research on assistive technology, such as improved wheelchairs, braces, and computer interfaces, has the potential to improve quality of life for people with spinal cord injury.

Author photos courtesy of James VanRensselaer and Will Kirk, Homewood Photographic Services

Fully updated and revised, the second edition of Spinal Cord Injury is the definitive guide for people with SCI and their families. Combining first-person accounts with up-to-date medical information, the book addresses all aspects of spinal cord injury -- recovery and coping, sex and family matters, transportation and housing, employment and leisure -- and reviews the challenges encountered by people with spinal cord injury throughout their lives.

The authors explain how spinal cord injury affects physical functioning and the impact of physical changes on emotions and social life. They offer a holistic approach to recovery that incorporates all aspects of living and emphasizes achieving optimal health, personal fulfillment, and meaningful family and social relationships.

The new edition of this helpful book includes a completely revised chapter on recovery and regeneration research, stem cell research, and activity-based therapies. New information is offered on medical and rehabilitative care of children and adolescents as well as preventative health measures for people of all ages living with spinal cord injury. The book includes expanded ideas and resources for socializing, travel, sports and recreation.