Spinal Cord Injury

If you provide care to someone living with spinal cord injury or paralysis, here are some steps you can take to help that individual cope.

Approximately 450,000 Americans have experienced a spinal cord injury; of these, over 250,000 currently live with some degree of paralysis. There are two basic types of spinal cord injury: complete and incomplete. In a complete injury, an individual is unable to function below the level of the injury. This means that there is no sensation or voluntary movement below the injury site.

In contrast, an individual with incomplete injury has some functioning below the primary injury level. Individuals with incomplete injuries can sometimes move one limb more than another, can feel body parts they are unable to move, or have better functioning on one side of the body.

In addition to problems with limb or body functioning, individuals often experience large changes. For example, the person may experience bowel, bladder, or sexual problems. Individuals with greater SCI injuries may also experience loss of involuntary functions such as the ability to breathe, to regulate blood pressure effectively, to control body temperature, to sweat below the injury level, and to control pain.

While the cause and nature of the condition varies with the individual, and each person responds according to their personality and prognosis, there are some fears and emotions commonly experienced by those who have experienced a spinal cord injury:

  • Feelings of dependency may cause your loved one to withdraw. For many people, the idea of losing even the smallest bit of self-sufficiency can be almost unbearable.
  • He or she may believe they’ve become a burden on you and others. The person may feel they’re “dragging everybody down” and that the family would be “better off ” without them.
  • Struggles with self-image and self-esteem, and fear of abandonment may all contribute to expressions of anger or isolation.
  • Embarrassment, or even shame, can accompany physical changes

Be prepared for these kind of reactions, which usually accompany daily living changes related to the condition. Remember that having these feelings is not wrong – the person has a right to them, so it’s best to avoid suggesting they shouldn’t feel as they do. Still, helping a loved one through this process of grief, anger, and acceptance demands a great deal from you – far too much to try to manage alone. The day-to-day physical stresses are tough enough; couple these with the emotional costs of taking on all responsibility for two people, and caregivers “hit a wall” sooner or later.

There’s no easy solution to these problems, and no single place you can look for all the support you may need. In most cases, caregivers and their loved ones can benefit the most by actively seeking out such help, rather than waiting for it to find them.

  • Keep the whole family involved and informed. You may want to share basic medical and clinical information to dispel any preconceptions or misconceptions other family members may have.
  • Encourage your loved one to join a support group, and seek one out for yourself. There’s a lot to be gained just from spending time with people who have faced the same challenges, overcome the same kinds of obstacles. This sense of community can reduce or prevent feelings of isolation. The number of disease-specific groups aimed at caregivers is large and growing, as well. Ask for names or contacts at rehabilitation centers, your chapter of the National Spinal Cord Injury Association, or the Paralyzed Veterans of America.
  • Look after your own health by exercising and eating properly. This isn’t about being selfish. You simply can’t afford not to take care of yourself, so banish all guilty thoughts.
  • Don’t put yourself at risk. Get help with the toughest, most physically demanding jobs.
  • Keep up to date on rehabilitation and maintain a regular schedule of doctor’s appointments and evaluations – even if nothing has changed or progress has been minimal.
  • If financial circumstances permit, consider professional help. Even a part-time personal assistant to help with smaller duties can make a large difference.
  • Focus on what the person can do instead of what they can’t. Allow them to exert as much independence as they can, and don’t do anything for them they can do for themselves.
  • It’s important to stay in regular contact with friends, to have visitors, and to make visits. Make the extra effort to cultivate new relationships, and don’t let the old ones slip away.
  • Take advantage of respite care. Set aside time to go out and just be by yourself. You need to take care of your own life.

This last point is particularly significant for caregivers of SCI individuals. As they deal with the long-term ramifications of their loved one’s condition, these caregivers often lose sight of their own needs. Friends and family members can even unintentionally contribute to this, as their attention may be focused only on the person with the injury. Admit that you have a right to your own feelings, as well, and find ways to be more than the person providing care. Talk to your loved one if you’ve begun to feel this way, or share what you’re going through with your support group. You’ll find you’re not alone.

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