Living With A Spinal Cord Injury: Living With A Spinal Cord Injury

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Living With a Spinal Cord Injury

Grieving

Adjusting to life after a spinal cord injury and learning to live with new limitations can be extremely frustrating. A spinal cord injury (SCI) is a life-changing event for you and your loved ones, and getting used to a limited ability to move or feel sensation is difficult and can take a long time. You—and your loved ones—may experience grief. Although we often think of grief as an emotion experienced after the death of a loved one, you may also grieve for your lack of feeling or movement or for your past lifestyle.

You may experience many emotions after your SCI: anger, sadness, and disbelief are just a few. Admitting to these emotions and discussing them with others will make it less likely that your emotions will control you and your actions. Allowing your emotions to control you can result in unhealthy decisions and behavior, a longer rehabilitation, and taking longer to adjust to your SCI.

Your emotions may trigger irrational thoughts. These are thoughts that you may believe, but they are based on lack of information, the wrong information, or false assumptions. These types of thoughts can result in unhealthy behavior that can hurt you.

For example, you may think "This injury means that I will never have a job." Thinking this may result in harmful actions, such as substance abuse ("Why shouldn't I drink? No one is going to hire me.") or a lack of effort in your care ("I know what pressure sores are, but what difference does it make?").

However, your injury does not mean you will never have a job. If you talk to others with SCIs, health professionals who work with them, or read research, you see that people with SCIs work, have responsible positions in companies, and do well. This is what you have to keep in mind.

You can help yourself avoid irrational thoughts by practicing thought-stopping, which is consciously identifying and stopping irrational thoughts, and by disproving irrational thoughts, which is looking at the thought rationally and listing why it may be irrational.

For more information on grief and the grieving process, see the topic Grief and Grieving.

Chronic pain

Pain in an SCI can be complicated and confusing. There are different types of pain, and they are often described in different ways. You may feel pain where you have feeling but can also feel pain in an area where otherwise you have no feeling. The pain may be severe at some times, but at other times it may disappear or bother you only a little.

The most common type of pain experienced with SCI is neuropathic pain around the injury area. This is also known as the "circle of fire" or the "ring of fire." Neuropathic pain is caused by damage to the nervous system. Other types of pain include musculoskeletal (pain in the bones, muscles, and joints), and visceral (pain in the abdomen).

The specific treatment for your pain depends on the type of pain: generally, you use medications and you modify activities and activity levels. Do not ignore your pain: talk to your health professional about it. He or she can help determine the type of pain and how to manage it. Also, pain can signal a more serious problem.

For more information on managing chronic pain, see the topic Chronic Pain.

Strength and flexibility

An SCI may make it difficult or impossible for you to move your arms and legs. Movement is what keeps your muscles strong and your joints flexible, so if you cannot move them easily, you may lose strength and some of your range of motion. This will make it harder to perform daily activities, such as getting dressed or moving between your wheelchair and other locations. By exercising, you can maintain or improve your flexibility and reduce muscle spasticity after an SCI. Exercise can help you prevent complications such as heart problems, diabetes, pressure sores, pneumonia, chronic obstructive pulmonary disease, high blood pressure, and urinary tract infections, and it can also help you prevent obesity.

What exercises you can do will depend on what part of your spinal cord was injured. You may be able to do some strengthening exercises with free weights or weight machines. You may be able to do flexibility exercises yourself, or you may need help. Your health professional can help you determine the best exercises for you.

Participating in sports is an excellent way to exercise. Many people with SCIs participate in sports, and there are often leagues or organizations to promote wheelchair basketball and racing and other activities. People with SCIs also hike, climb mountains, and ski. Participating in active recreation not only helps your health but also provides emotional benefits.

Note: Exercise may trigger autonomic dysreflexia, a syndrome characterized by a sudden onset of very high blood pressure and headaches. If not treated promptly and correctly, it may lead to seizures, stroke, and even death. Although autonomic dysreflexia rarely leads to these more serious complications, it is important to know the symptoms and watch for them. Autonomic dysreflexia is more common in people with an injury to the thoracic nerves of the spine or above (T6 or above).

Nutrition

What you eat makes a difference in your health. By eating healthy foods, you can reduce your risk of some complications and make other tasks, such as bowel management, easier.

A healthy diet is:

• Balanced—you eat many different types of foods from different food groups. Food groups include whole grains (rice, bread, pasta, or cereal), fruits, vegetables, dairy (milk, yogurt, or cheese) and meat, poultry, fish, dry beans, nuts, or eggs.
• Varied—you eat a variety of foods within each food group (for example, eating different fruits from the fruit group instead of eating only apples). A varied diet helps you get all the nutrients you need, because no single food provides every nutrient. Eating a wide variety of foods will also help you avoid eating too much of any substance that may be harmful.
• Moderate—you eat a little of everything but nothing in excess. There are no good foods or bad foods. All foods can fit in a healthy diet if you eat everything in moderation.

Eating healthy foods helps you achieve and maintain a healthy weight. Being either underweight or overweight increases your risk of pressure sores. If you are underweight, there is more pressure on the bony areas where the sores are likely to develop. If you are overweight, there may be increased friction on the skin when you move, which also can result in pressure sores.

People with SCIs may have special nutritional needs, such as needing protein to prevent pressure sores or increased fiber to help with bowel care. A registered dietitian can help you plan a diet to meet your nutritional needs.

For more information on a healthy diet and weight, see the topics Healthy Eating and Healthy Weight.

Mobility

Mobility is an important aspect of an SCI. The ability to move lets you participate more fully in community life and do the things you would like to do. You are not "confined" to crutches or wheelchairs—they make you independent. Mobility devices offer you access to work or shopping or any other travel outside the home. They may allow you to participate in races, basketball, tennis, and other sports.

Types of mobility devices include braces, crutches, walkers, wheelchairs, and scooters.

Moving from your wheelchair to other locations is known as a transfer. Your injury and strength will determine what type of transfer you can do: you may be able to do it yourself, or you may need assistance. There are general things that are important to know when transferring, such as locking your wheelchair and making the distance between the transfer surfaces as small as possible.

Adapting your home

As your rehabilitation ends, you and your loved ones need to start thinking about what you need to do when you are at home. Because you may have to use a wheelchair (lowering your height) and have limited movement and feeling, you may have to adapt your home.

Considerations for adapting your home include ramps and widened doorways, special utensils for eating, and special devices for dressing and grooming.

For more information on adapting your lifestyle and home, contact any of the organizations and Internet sites listed in the Other Places to Get Help section of this topic.

Thinking of the future

Today, people with SCIs live much longer than in the past. In many cases, 1 year after the injury, life expectancy is close to that of a person without an SCI.⁴

If you are planning to work, you have the same legal rights as before your injury. People with spinal cord injuries who want to work are legally protected from discrimination by the Americans with Disabilities Act.

Plan ahead for possible serious and life-threatening complications. You, your family, and your health professional should discuss what types of medical treatment you want to receive (such as whether you want to receive mechanical ventilation) if sudden, life-threatening breathing problems develop. This discussion may include the possibility of your creating an advance directive to state your wishes if you become unable to communicate them. For more information, see the topics Writing an Advance Directive and Care at the End of Life.

Last updated:	February 22, 2007
Author:	Kathe Gallagher, MSW
Reviewed By:	Adam Husney, MD - Family Medicine, Nancy Greenwald, MD - Physical Medicine and Rehabilitation
Editors:	Kathleen M. Ariss, MS, Pat Truman, MATC