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. 
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. 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:
- Paralysis (if left untreated)
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
Common secondary health conditions among adults with cerebral palsy include:
- Joint pain
- 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. ” 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:
- FAQ and interactive quiz section about the transition
- TransitionQ from CanChild (Check out the mobile app!)
- A general guide to supported decision-making
- Self-directed care roles and responsibilities when hiring a personal care assistant
- Article by the Canadian Journal of Neurological Sciences
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
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. 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.  As with most issues related to cerebral palsy, a coordinated, multidisciplinary team helps individuals ensure that they’re receiving the proper care.
Find a Psychologist
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:
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
- Breathing difficulties/sleep apnea
- Inability to change positions
- Problems with sleep/wake cycles
- Abnormal sleep pattern movements
- Psychological factors (i.e. missing parents and night)
- Saliva aspiration
Environmental factors may include:
- Positioning while sleeping
- Material of bedding (especially for those affected by sensory input)
- 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.
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.
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.
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.
References and Sources
- Henderson, R., Stevenson, R., Abbas, A., Barrington, J., & Kairalla, J. (2005, June). Longitudinal changes in bone density in children and adolescents with moderate to severe cerebral palsy. Retrieved June 08, 2021, from https://pubmed.ncbi.nlm.nih.gov/15973316/
- KJ;, S. (2009, October). Osteoporosis in adults with cerebral palsy. Retrieved June 08, 2021, from https://pubmed.ncbi.nlm.nih.gov/19740209/
- Stevenson, R., Stallings, V., Samson-Fang, L., O’Donnell, M., Liptak, G., Worley, G., . . . Conaway, M. (2006, September). Growth and health in children with moderate-to-severe cerebral palsy. Retrieved June 08, 2021, from https://pubmed.ncbi.nlm.nih.gov/16950992/
- Whitney, D., Peterson, M., Devlin, M., Caird, M., Hurvitz, E., & Modlesky, C. (2018, December). Bone marrow Fat physiology in relation to Skeletal metabolism and Cardiometabolic disease risk in children with cerebral palsy. Retrieved June 08, 2021, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6237626/
- Whitney, D., Modlesky, C., Pohlig, R., Slade, J., Barbe, M., Miller, F., & Singh, H. (2017, January). Cortical bone deficit and fat infiltration of bone marrow and skeletal muscle in ambulatory children with mild spastic cerebral palsy. Retrieved June 08, 2021, from https://pubmed.ncbi.nlm.nih.gov/27732905/
- DG;, W., French, Z., & Caird, M. (2019, October). Osteoporosis epidemiology among adults with cerebral palsy: Findings from private and public administrative claims data. Retrieved June 08, 2021, from https://pubmed.ncbi.nlm.nih.gov/31768490/
- AACPDM. (2021, March 25). Fact sheets. Retrieved June 14, 2021, from https://www.aacpdm.org/publications/fact-sheets
- MD;, P., Gordon, P., & Hurvitz, E. (2012, October 23). Chronic disease risk among adults with cerebral palsy: The role of premature sarcopoenia, obesity and sedentary behaviour. Retrieved June 14, 2021, from https://pubmed.ncbi.nlm.nih.gov/23094988/
- MD;, P., Gordon, P., Hurvitz, E., & Burant, C. (2012, November 1). Secondary muscle pathology and metabolic dysregulation in adults with cerebral palsy. Retrieved June 14, 2021, from https://pubmed.ncbi.nlm.nih.gov/22912367/
- Rodby-Bousquet, E., Alriksson-Schmidt, A., & Jarl, J. (2020, September 19). Prevalence of pain and interference with daily activities and sleep in adults with cerebral palsy. Retrieved June 14, 2021, from https://onlinelibrary.wiley.com/doi/10.1111/dmcn.14678
- Rosenbaum, P., & Rosenbloom, L. (2012). Cerebral palsy: From diagnosis to adult life. London: Mac Keith Press.
- Peterson, M., Haapala, H., & Hurvitz, E. (2012, May). Predictors of cardiometabolic risk among adults with cerebral palsy. Retrieved June 14, 2021, from https://pubmed.ncbi.nlm.nih.gov/22541309/
- Kimberley J. Smith, P. (2019, March 01). Risk of depression and anxiety in adults with cerebral palsy. Retrieved June 10, 2021, from https://jamanetwork.com/journals/jamaneurology/fullarticle/2719463
- McMahon, J., Harvey, A., Reid, S., May, T., & Antolovich, G. (2020, May 15). Anxiety in children and adolescents with cerebral palsy. Retrieved June 10, 2021, from https://onlinelibrary.wiley.com/doi/abs/10.1111/jpc.14879
- Glader, L. (2019). Children and youth with complex cerebral palsy: Care and management (p. 219, p. 222) (1399979700 1021047818 R. D. Stevenson, Author). London: Mac Keith Press. doi:https://www.mackeith.co.uk/shop/complex-cerebral-palsy-care-and-management/.
- Glader, L. (2019). Children and youth with complex cerebral palsy: Care and management (p. 219, p. 220) (1399979700 1021047818 R. D. Stevenson, Author). London: Mac Keith Press. doi:https://www.mackeith.co.uk/shop/complex-cerebral-palsy-care-and-management/.
- Miller, F., & Bachrach, S. J. (2017). In Cerebral palsy a complete guide for caregiving (2nd ed., p. 71). Baltimore: Johns Hopkins University Press. doi:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2083126/