AUSTIN, Texas — People who live with multiple sclerosis and other chronic conditions can improve their quality of life in a variety of ways, but experts agree there is a major need for more education on the subject.
Dr. Alexa Stuifbergen, an associate professor at the UT Austin School of Nursing, is running a three-year study of the effectiveness of programs that promote active, independent attitudes toward self-care — and health care in general — among people with MS.
“We have found that when people practice various health promoting behaviors, including physical activity, stress management and healthy eating habits, it mediates the effects of illness on quality of life,” Stuifbergen said. “We have also found that people who engage in health-promoting behaviors, regardless of the severity of their disability, perceive their quality of life as more positive.”
Rehabilitation programs, reimbursed by insurance, have traditionally been designed for victims of accidents and sudden injuries, including spinal cord injuries, head injuries or strokes. There has been little research into ways such programs could help people coping with diseases that disable over a period of years. Most are diagnosed during a brief outpatient appointment, with little opportunity to discuss ways they can promote their own health and well being, and remain as active as possible as the disease progresses.
Stuifbergen, recently recognized by the American Academy of Nursing for outstanding contributions to her profession, has spent two decades studying people in the process of coping with chronic, disabling illness.
“I would see some people who managed to live full lives despite significant disability, and then there were others who didn’t seem to have as much apparent difficulty, yet they were struggling even more,” she said. She said her research shows that well being “seems to depend heavily on how they accept the illness, learn to manage it, find new ways to do things and live with it so that the illness is not the center of their lives.”
MS is an incurable, potentially disabling disease of the central nervous system. Actress Annette Funicello and comedian Richard Pryor both have the disease. Symptoms range from paralysis to mild numbness, tingling and fatigue.
For many people, symptoms of the disease are not visible. More than two-thirds of those diagnosed with MS are still able to walk after 20 years with the disease. Three-fourths of people with MS are women, and three-fourths are between the ages of 35 and 64 years of age.
The Stuifbergen project, funded by the National Institutes of Health, will determine how effective an eight-week program of fitness, nutrition, stress management, problem-solving techniques and emotional support from health care professionals can be in improving the quality of life of MS patients. The program will also feature three months of follow-up support by telephone. Co-investigators are Dr. Heather Becker, a research scientist with the School of Nursing, and Dr. Gayle Timmerman, an assistant professor.
About 150 women in Austin, Houston and San Antonio are participating. The purpose is to help women make choices that will give them “maximum pay off” in the face of an unpredictable disease.
“We don’t make promises that this will change the course of the disease,” Stuifbergen said. “What it does is improve your health, so that, whatever the disease brings you, you will be in the best condition possible to deal with it.”
Stuifbergen said the studies of women with MS should produce useful models for research on other disabling health conditions. Programs to promote self-care and better overall health for people with slow, degenerative diseases could mean substantial savings in medical care costs, with fewer hospital or outpatient visits. About 49 million Americans live with some kind of disabling, chronic health condition, including 350,000 with MS.
Stuifbergen said a key to dealing with MS “is really learning to live with uncertainty and the loss of control. They also have to make decisions about how to use their resources, their energy. That is the most difficult thing, especially for women. We think we can be all things to everybody, and they have to face the fact that they cannot.”
Limited financial resources, lack of transportation, time limits (especially for working women with families), financial constraints, inaccessible facilities, low levels of fitness due to limits on mobility, and lack of information on how to exercise safely can all be barriers to healthier lifestyles. The program teaches women how to assess these barriers and develop ways to deal with them.
“We don’t try to give them answers, but to teach them skills,” Stuifbergen said.
Asked her advice for anyone who has recently been diagnosed, Stuifbergen said: “I would tell them to get all the information that they can and to think creatively about the options that are available to them, to be as flexible as possible, and to develop a variety of support resources. They need to really focus on taking care of their health — not just on controlling a disease.”