All Americans are living longer than people did years ago, and people who have cerebral palsy (CP) are no exception. For people with disabilities, however, living to an old age is a new phenomenon. We are just now learning what it means to grow older with a disability.
Although much of the information we are gathering on the topic is discouraging, there are strategies to make aging with a disability a more successful experience. “I have seen many advances in diagnoses and treatments since I was young,” said Bonnie Witt, an adult who has cerebral palsy. “People with disabilities are living longer, more productive lives. Doctors who treat adults with disabilities are navigating uncharted territory. This is a fairly new area of medicine, so—in a small way—we are pioneers.”
Symptoms of Aging Appear Earlier
People without disabilities reach the peak of their physical function between ages 18 and 25. After that, their abilities decline about 1 percent per year. At age 70, therefore, people without disabilities are likely to have about 50 percent of their top lung function, 50 percent of their peak kidney function and so on.
Even before their abilities begin to decline, however, people who have disabilities typically don’t reach the same highest points of physical function that people without disabilities do. And when the decline begins, it might be steeper in people who have disabilities. Author and Professor Bryan Kemp reported that people with disabilities show a decline of 1.5 to 5 percent per year after reaching their highest level of physical function.
In addition, people with disabilities experience aging-related changes years earlier than their non-disabled peers do. Although study results vary, aging-related changes generally occur 20 to 30 years after the onset of a disability. For people who have CP, such changes can occur in the 20s, 30s or 40s.
Witt says her experience bears witness to those statistics. “I’ve encountered changes since I started to age,” she says. “There are things that my body is going through that most able-bodied people don’t experience until they are significantly older.”
Claudia Carlisle—also an adult with cerebral palsy—agrees. “I used to be able to walk all day, until I had surgery to straighten out my knee,” she said. “I was never able to walk all day again.”
Pain Is Common
Pain is the most common initial problem for adults with CP. Studies show that most of the older adults who have CP report daily pain. One-third report constant pain. “As a child, I don’t remember having pain,” Carlisle said, “but now I live with constant pain.”
The hip, knee, back and neck are the most common sites of pain. Medication is the most common treatment for pain. Studies show that 92 percent of people with CP report that exercise helps their pain symptoms, but only 49 percent report that they exercise even infrequently. People with disabilities use other methods of pain treatment, such as biofeedback or counseling, less frequently than people who don’t have disabilities do.
People with CP who walk have the most problems with pain, because their gait and movement patterns cause abnormal wear and tear on their bodies. That leads to arthritis. Twenty-five percent of people with CP who walk as children lose that ability as teens or adults. Carlisle, for example, stopped walking when she was about 14. Some stop walking in their 20s because it becomes more efficient to use a wheelchair or scooter. Others stop ambulating in their 40s because of pain. For all people with CP who continue to walk, distance is compromised—in other words, they can’t walk as far as they used to.
People who are in pain typically experience more fatigue than other people do, so they tend to do less and rest more. When people are less active, they lose strength and endurance. Less strength means less ability to perform necessary or enjoyable activities, and it results in a decreased ability to care for oneself. That, in turn, can lead to depression, a need to ask more from family members or a need to hire more assistance. The effect on relationships and the corresponding financial consequences are obvious.
Falls are very common in adults with CP. Reports show that 40 percent of adults with CP fall at least once each month, and 75 percent fall every two months. In fact, falling is so common that most people do not even think of reporting the falls to their doctors. “I don’t fall very much, but I have to really try to keep myself from falling,” Carlisle said. “I have learned that I can’t think of anything else when I am standing. If I do, I tend to fall more often.”
Because the risk of breaking a bone increases with age, it’s important to improve strength and to plan movements, as much as possible, to reduce the incidence of falls. Other problems that occur in people who are aging with CP include increased bowel and bladder problems and more joint contractures.
Despite the prevalence of such medical concerns, studies show that 80 percent of people with CP feel that their primary physicians do not know enough about the condition. In fact, studies also show that people with CP do not get the same preventative medicine, testing and interventions that their non-disabled peers do. For example, studies show that 90 percent of adults with CP do not get mammograms, Pap smears or prostate checks. Even the frequency of monitoring blood pressure, blood cholesterol and blood sugars is not the same as it is for people without disabilities. As a result, people with CP have greater rates of death from heart disease and breast cancer. In addition, inadequate dental care for children with disabilities can lead to serious dental problems as adults.
Carlisle said she thinks her primary-care physician should know more about CP. Both she and Witt receive specialty health-care services at Gillette Lifetime Specialty Healthcare, a clinic for adults with conditions such as CP. “I really appreciate an environment like that of the Gillette Lifetime clinic,” Witt says. “It is reassuring and comforting to know that I can continue to receive great care as a respected individual from providers who understand adult issues in all areas of my life.”
—Nancy Mitchell, MA, OTR/L, ATP is a Gillette Lifetime Specialty Healthcare employee. This is the debut of Health Matters, a new Access Press column.