When many people think of cerebral palsy, they think of a childhood disorder. But most children with cerebral palsy will live well into adulthood and will desire to live full lives in their families, workplaces, and communities. (1)
In the past, less attention was paid to the challenges of cerebral palsy in adulthood, but researchers are learning more each day about those challenges and about the best practices in treating adults with cerebral palsy. They agree that adults with cerebral palsy benefit when they and their care providers pay continued attention to their physical, mental, and social health.
Physical Health Problems Are an Ongoing Concern
The neurological injury caused by cerebral palsy does not change during adulthood, but the impairments caused by the injury can become progressive. (2) People with cerebral palsy use three to five times the amount of energy that people without cerebral palsy use in their daily lives, and this can cause impairments over time. (3)
In addition to the physical demands of cerebral palsy, people with cerebral palsy can experience such health challenges in adulthood as progressive loss of hearing or vision, respiratory problems, osteoporosis, epilepsy, hypertension, kidney stones, and nutritional problems.
As many as 75 percent of adults with cerebral palsy also experience chronic pain. This can include musculoskeletal pain, gastrointestinal pain, dental pain, and other kinds. (4,5)
Getting Healthcare Services Is Sometimes a Challenge
Rachel Byrne, the executive director at the Cerebral Palsy Foundation, notes that one challenge for adults with cerebral palsy is the transition from pediatric to adult medical services.
“Many adult mainstream services aren’t really prepared to see people with disabilities,” Byrne says. “So that means sometimes adults are still seeing their pediatrician or their orthopedic surgeon as their primary care provider. One of the biggest barriers is finding a primary care provider or specialist that has knowledge about cerebral palsy.”
People with cerebral palsy or their caregivers should work with their primary care provider to create a care plan that anticipates and addresses the challenges of aging. This plan may also include dates for important screenings and tests, a plan for pain management, as well as a description of how members of the healthcare team will coordinate care and communicate with each other. These care professionals may include neurologists, physical therapists, surgeons, occupational therapists, assistive technology experts, mental health professionals, and others.
Exercise Helps to Maintain Good Health
Exercise can play an important role in maintaining good physical health for adults with cerebral palsy. Exercise can improve mobility and functional capacity and help with weight maintenance. It also reduces the risk of injury, pain, type 2 diabetes, hypertension, cardiovascular disease, depression, stroke, and heart attack. (6)
Exercises for adults with cerebral palsy should focus on strength, endurance, cardiorespiratory health, and flexibility. Exercises should also reflect the functional capacity of the individual and be conducted in a safe environment.
Many people can benefit from consulting a physician as well as a fitness expert familiar with cerebral palsy to design an individualized exercise plan. Adults with cerebral palsy may also enjoy exercising in a group to help build motivation and social support.
Mental Health: Depression Is Common
The rate of depression is three to four times higher among people with disabilities like cerebral palsy. (3) Anywhere from 30 to 50 percent of people with chronic pain also experience depression or anxiety. People with cerebral palsy who have trouble sleeping because of physical complications, stress in their environment, and feelings of loneliness are at increased risk of developing depression. It’s important to report mental health symptoms to your doctor as well as physical ones. (7)
People with cerebral palsy who experience mental health challenges can benefit from interventions such as psychotherapy, pharmacotherapy (such as antidepressant medication), stress-reduction techniques, and peer support.
Psychotherapy, also known as talk therapy, can help individuals identify and challenge negative thought patterns and build coping skills to deal with setbacks and stress.
Neurologists and other cerebral palsy specialists may be able to recommend therapists and counselors who specialize in working with individuals with cerebral palsy. Medication can be helpful for managing the symptoms of depression and other mental illnesses as well, but it’s important to check with your doctor to ensure that there are no potential negative interactions with other medications an individual takes for their physical health.
Peer support groups can be an invaluable resource, helping people connect with other adults with cerebral palsy. They can also provide psychoeducation and resources for navigating the aging process and its potential challenges. Support groups often meet in local community centers, clinics, hospitals, schools, and places of worship, but virtual groups also meet and communicate online.
Social Health: Home, Work, Community
Social health is a fundamental component of any adult life, so it is important for adults with cerebral palsy to consider how to stay plugged in to social supports and activities over time.
People with disabilities like cerebral palsy are more likely to experience higher rates of loneliness. (8) The breadth of a person’s social network can be affected by barriers such as lack of communication and mobility access, which prevent people with cerebral palsy from participating fully in their communities. These communities can include work, family, and neighborhood, as well as community organizations.
Assistive technology can play an important role in helping an individual stay connected to a community and communicate their thoughts and needs.
Employers are required to provide reasonable accommodations for an individual with cerebral palsy so that they can reach their full potential at work but also participate in community with their colleagues. (9)
Adults with cerebral palsy are also encouraged to stay connected to local or national organizations that can advocate for their needs in their community and connect the individual to social resources as they age.
Couples therapy or family therapy can also be a place to strengthen the social health of the family as a person navigates the process of aging with cerebral palsy.
The challenges someone with cerebral palsy faces in adulthood will vary depending on the severity of their condition as well as their unique experiences. Regardless, those who stay focused on their health and well-being find they are more prepared to adapt to changing needs and enjoy life.
If you’re an adult with cerebral palsy, consider what steps you can take today to better navigate the aging process and enjoy adulthood.