Adjusting to life after a spinal cord
injury and learning to live with new limitations can be extremely frustrating.
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
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.
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. Letting your
emotions control you can result in unhealthy decisions and behavior, a longer
rehabilitation (rehab), 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?").
But your injury
does not mean you will never have a job. If you talk to others who have SCIs
and to doctors who work with them, or if you 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.
more information on grief and the grieving process, see the topic
Grief and Grieving.
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 you may 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
specific treatment for your pain depends on the type
of pain: in general, you use medicines and you
modify activities and activity levels. Do not ignore
your pain: talk to your doctor about it. He or she can help figure out 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
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 your
muscles and joints 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. With exercise, you can keep or improve your flexibility
muscle spasticity after an SCI. Exercise can help you
prevent complications such as heart problems,
chronic obstructive pulmonary disease,
high blood pressure, and
urinary tract infections. And exercise can also help
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 doctor can help you find the best exercises for you.
part in sports is an excellent way to exercise. Many people who have SCIs take part
in sports. And there are often leagues or groups to promote wheelchair
basketball and racing and other activities. People who have SCIs also hike, climb
mountains, and ski. Taking part 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
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).
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.
- Balanced—you eat many different types of foods from different
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.
- 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 reach and stay at 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
Mobility is an important aspect of an
SCI. The ability to move lets you take part more fully in community life and do
the things you would like to do. You are not "confined" to crutches or
wheelchairs. Rather, these devices make you independent. Mobility devices offer
you access to work or shopping or any other travel outside the home. They may
allow you to take part 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 rehab 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 groups 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, one year after the injury,
life expectancy is close to that of a person without an SCI.3
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
Plan ahead for possible serious and
life-threatening complications. You, your family, and your doctor 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 happen. This discussion may include the possibility of your
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.