Adults with Cerebral Palsy | Cerebral Palsy Research Network

Cerebral palsy (CP) is often thought of as a childhood condition and children with CP get a broad number of interventions from orthotics to therapy to injections to surgery and medications throughout their childhood. The transition to adulthood often results in difficulty finding physicians trained in treating the effects of CP into adulthood. There are many more adults with CP than there are children and the effects of CP are lifelong even though the initial injury to the brain causing CP happens in childhood. While the brain injury is not progressive, the cascade of the musculoskeletal impacts progress with age. Here we summarize the topics affecting the health of adults with cerebral palsy and link to the detailed resources in our Adults with Cerebral Palsy web pages.

Cerebral Palsy Bone and Muscle Health

If left untreated, issues relating to musculoskeletal health can significantly impact quality of life. There is a growing body of research showing that bone formation in individuals with cerebral palsy is less than people without cerebral palsy.^[1] ^[2]^[3]^[4]^[5]^[6]

Because of these differences, people with cerebral palsy are at an increased risk for:

Hip dislocation
Curvature of the spine
Foot and knee deformities
Back pain
Cervical stenosis

Research suggests that the best way to combat these musculoskeletal issues is via intervention early in childhood. Child with cerebral palsy wearing a helmet, riding a horse, as an adult stands beside them. It is critical that infants at high risk for cerebral palsy undergo a regimen of either active or assistive movement as early as possible. Likewise, exercise—even non-impact activities like swimming—help mitigate the effects of cerebral palsy.

Bone Health in Pre-teens with Cerebral Palsy
Parents or caretakers should continue to focus on bone health as children with cerebral palsy move into adolescence; bone formation continues during this time.

Maintaining Bone Health in Adults with CP
For children who walk, a bone scan at age 21 is a useful baseline assessment. Although the relationship between cerebral palsy and bone health is not fully understood, it is clear that physical exercise helps build bone. In order to address and, where appropriate, proactively treat these issues, it’s important for people with cerebral palsy to regularly consult with an orthopedic surgeon.

Cerebral Palsy and Spinal Stenosis

Spinal stenosis refers to a narrowing or compression of the spinal canal and/or spinal nerve root passages in the neck. It is common in adults with cerebral palsy, but often goes undiagnosed. Sometimes, the compression associated with spinal stenosis can lead to myelopathy, which can cause significant nerve damage. Symptoms of spinal stenosis include:

Pain
Numbness
Tingling
Paralysis (if left untreated)^[7]

Additionally, keep an eye out for changes in day-to-day living, such as:

Changes in continence
Changes in mobility
Changes in fine motor skills (i.e. hand function)
Nerve pain

Adults with CP are encouraged to be proactive with their primary care doctors, who can then refer out to a specialist when needed.

Cerebral Palsy and Functional Decline

As adults with cerebral palsy age, they can experience chronic pain, functional loss, early muscle loss, and other signs of premature aging.^[8]^[9]^[10]^[11]

Common secondary health conditions among adults with cerebral palsy include:

Diabetes
Asthma
Stroke
Emphysema
Joint pain
Arthritis
Hypertension
Other cardiovascular issues

These findings—paired with a lack of state and federal resources—contribute to poor health outcomes for many adults with cerebral palsy. The good news? Recent research demonstrates that low-cost exercise programs can help delay and prevent some of these issues. In a study by Dr. Mary Gannotti, a professor at the University of Hartford, she found that preventative measures—namely physical activity and exercise—should “begin in adolescence to address functional decline among individuals with CP. ”^[12] Ultimately, an individual’s care plan should be informed by the nature of their condition. But common members of an individual’s care team may include:

A primary care doctor
A Physical Medicine and Rehabilitation (PMR) doctor
A neurologist
An orthopedic surgeon
Other specialists, when needed

Frequent visits to a primary care doctor can help catch issues early.

Some fitness resources:

Staying Driven (online adaptive fitness organization)
The National Center on Health, Physical Activity, and Disability (NCHPAD)
The National Sports Center for the Disabled (NSCD)

Transitioning Into Adulthood with CP

The transition into adulthood can present a number of health-related challenges for young people with cerebral palsy. It’s not uncommon for children with cerebral palsy to “age out” of their pediatric specialists and then struggle with finding nearby adult specialists.

Questions that should be asked as someone approaches 18:

Will they be staying with a family practice provider or will they be finding a new doctor?
Will they need to find an adult specialist?
Will the individual’s insurance be changing?
Will they need to hire a personal care assistant? (PCA)?
- Will they be doing this privately (as an employer), or through an agency?

Starting the transition early can help reduce stress and make the process easier.

Resources for the transition:

Finding a doctor
Finding an adult doctor knowledgeable about cerebral palsy can be challenging, depending on where you live. We’ve compiled a list of resources to help:

American Academy for Cerebral Palsy and Developmental Medicine (database of medical professionals who self-identify as treating cerebral palsy)
Children’s hospitals that continue care into adulthood, such as: UCLA, Cincinnati Children’s, Gillette Specialty Care, Johns Hopkins, University Michigan Medical Center, Nationwide Children’s Hospital, Rady Children’s Hospital, UNC, Shirley Ryan Ability Lab, Yale University
The Weinberg Family CP Center at Columbia University Irving Medical Center
MyCP, our community registry

With the rise of telehealth, we’re optimistic that options will continue to expand for people with cerebral palsy, especially those who don’t live in major metropolitan areas.

Cerebral Palsy and Mental Health

Recent research has found that people with cerebral palsy are at an increased risk for mental health conditions like anxiety and depression.^[13]^[14]

Diagnosis and Treatment
Although further research is needed, it does seem clear that early detection and treatment can improve the overall mental health of both the individual and the individual’s family. Establishing positive mental health habits early can also have an impact on a person’s quality of life as they age. [15]Some of these habits include cognitive behavioral therapy (CBT), prosocial and assertiveness skills support, medications (when appropriate), and participation in adapted sports and recreation activities.

Ideally, individuals should seek out a psychologist who has a background in working with people who possess both a brain injury and mental illness. ^[16] As with most issues related to cerebral palsy, a coordinated, multidisciplinary team helps individuals ensure that they’re receiving the proper care.

Resources

Finding Treatment

SAMSHA’s Behavioral Health Treatment Services Locator

Find a Psychologist

American Psychological Association’s professional locator

Find a Psychiatrist

American Psychiatric Association’s Psychiatrist locator
American Academy of Child and Adolescent Psychiatry’s Child and Adolescent Psychiatrist Finder

Cerebral Palsy and Pain

Unfortunately, many adults with cerebral palsy experience chronic pain. While the pain may be due to issues endemic to cerebral palsy like involuntary spasticity and contractures, it’s often because of undiagnosed—and treatable—secondary conditions.

Secondary causes of pain that often go undiagnosed include:

Dystonia
Gastro-intestinal problems
Hypertonia
Tooth decay
Constipation
Reflux
Hip subluxation

Individuals with cerebral palsy, their caretakers (if applicable), and primary care doctors should familiarize themselves with common secondary conditions and be on the lookout for them.

Cerebral Palsy and Sleeping Problems

Insomnia is very common among both children and adults with cerebral palsy.

Clinical reasons may include:

Pain or discomfort
Heartburn/reflux
Breathing difficulties/sleep apnea
Inability to change positions
Problems with sleep/wake cycles
Seizures
Abnormal sleep pattern movements
Psychological factors (i.e. missing parents and night)
Saliva aspiration

Adult female with cerebral palsy smiles in a kayak as she paddles. Environmental factors may include:

Positioning while sleeping
Material of bedding (especially for those affected by sensory input)
Noises
Light (too much or not enough)
Temperature (too hot, too cold)

Parents of children with cerebral palsy may consider short-term respite care options. If the insomnia continues, primary care doctors often refer the individual with cerebral palsy to a sleep specialist.

Medications and alternative remedies can both entail serious threats to safety and should be discussed with the individual’s care team.

Cerebral Palsy and Women’s Health

Disparities in health care for people with disabilities is a critical health issue, particularly for women.

Preventive health
Young women should be asked the same questions about sexual activity and interest in pregnancy as women without disabilities, and it’s critical that all women with disabilities have access to pap smears and mammograms.

Pregnancy
While most women with cerebral palsy can have a vaginal delivery, those with secondary conditions should discuss with their doctor the effects that their normal medication may have on a developing fetus.^[17]

Additional Resources
In addition to some of the aforementioned resources, CPRN is also developing a database of relevant books, videos, and digital resources for adults with cerebral palsy. Be sure to check back in occasionally, as new resources are being added to the database.

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