Cerebral Palsy and Functional Decline
One of the most discussed topics by adults in the cerebral palsy community is functional decline and preventing and treating it. While children with cerebral palsy have access to multiple state and federally funded assistance programs and insurance coverage for therapy, there is presently a deficit in options for adolescents and adults with cerebral palsy. Adults experience declining function at a time when resources for therapy to support their musculoskeletal health have dwindled. Just as they require extra care and pain management, and with 75 percent or more of adults with cerebral palsy reporting pain. They have to fight and advocate for tailored treatments for their needs. Fortunately there are low cost exercise programs that may be very helpful for preventing and addressing some of their symptoms.
“My biggest challenge is understanding what is happening within my body. It appears over the last couple of years that my muscle has deteriorated. I expected some deterioration, but not quite this early. I would like to determine if this is reversible or how much it will worsen.”
Why Do These Issues Present in Early Adulthood?
There may be many reasons for functional decline including increased size after adolescent growth spurts, decreased physical activity, osteoporosis, increased spasticity, hip and knee problems, pain and problems with balance. When University of Michigan researchers analyzed nine years of medical files in 2015, they identified eight secondary conditions that occurred with more frequency in patients diagnosed with cerebral palsy. “We found physical inactivity and immobility were strongly associated with risks for these chronic health conditions.”:
“Unfortunately, it’s still not fully understood how to best care for individuals with cerebral palsy as they transition into and throughout adulthood,” lead author Mark Peterson, Ph.D., MS, a parent of a child with cerebral palsy, commented in a press release.“We sought to determine whether adults with cerebral palsy suffer from secondary chronic health conditions more frequently, and how that can affect future medical care for this population”, said Dr. Peterson. “Because cerebral palsy results in accelerated losses of mobility with age, individuals tend to experience more fatigue and have greater muscle and joint pain over time,” Dr. Peterson continued. Although some of these conditions may result from engaging in less activity in early life, conditions such as pain and arthritis may also further prevent it, making it vital to find solutions for or adult community.
“While strength training can reduce muscle weakness and improve the ability to walk in children with CP, our community has likely been disadvantaged from childhood due to altered body composition and a propensity for low strength.”“Children with CP have a predisposition to high fat percent, low fat-free muscle mass, and high levels of fat in the muscle,” explains Dr. Ed Hurvitz, Chair of Physical Medicine and Rehabilitation at the University of Michigan, citing an OnTrack survey that followed children 6-12 as they aged and they showed lost strength, endurance, and balance.
Preventing and Addressing Loss of Function
Like many medical issues, early intervention as quickly as possible is key. Alongside functional challenges it’s important to stay as active as possible to prevent or minimize cardiovascular, renal, musculoskeletal, and respiratory chronic diseases in adulthood. Mary E. Gannotti, PT, Ph.D. is a professor at the University of Hartford, CT. She surveyed members of the adult cerebral palsy community as part of a Cerebral Palsy Research Network study for a 2020 preliminary report on Changes Across Lifespan in Gross Motor, Manual Abilities, and Communication & Function. She discovered, “Chronic pain, decreased strength, and changes in tone were cited as reasons for gross motor decline,” she wrote in the report. “Preventative measures should begin in adolescence to address functional decline among individuals with CP.”
Once adults find themselves in midst of declining function and suffering from spasticity and other symptoms, they need to seek care and support to help them move regularly. Identifying and addressing the causes of functional decline requires comprehensive and careful assessment. Depending on individual needs, a patient may see a Primary Care doctor, a Physical Medicine and Rehabilitation doctor (PMR), also known as a Physiatrist, a Neurologist, an Orthopedic Surgeon, and doctors specializing in other areas of medicine where needed. They can seek help from a PMR or neurologist to discuss treatment options for pain and stiffness, including oral medication, botox injections, baclofen pumps, or rehabilitative therapy. An orthopedic surgeon may operate to lengthen tendons and improve mobility in some circumstances.
Annual examinations with a Primary Care doctor can help to detect any underlying issues and allow for an intervention plan for new impairments as they occur. Many adults report their ability to walk and move, and how their bodies feel and function can change sometimes very quickly. In addition to receiving care for their symptoms it’s important to rule out other conditions that may cause abnormal and rapid deterioration of movement, such as cervical spinal stenosis which is treatable and may cause rapid decline, and sometimes difficulty speaking.
Exercise for Prevention and Addressing Symptoms of Functional Decline with Cerebral Palsy
In another Cerebral Palsy Research Network study, Hurvitz is researching the effects of aging with cerebral palsy and hopes to identify specific exercise strategies to promote better health outcomes. He is studying the feasibility of using grip strength to assess body composition in people with cerebral palsy. Grip strength is an established biomarker of health, but there is little research on how this applies to the cerebral palsy community. “This research will aim to understand how to best treat adults and update treatments and therapies for children with cerebral palsy to prevent some of the secondary impairments such as pain, fatigue, and functional loss.” In the meantime, Hurvitz and his colleagues have summarized existing studies on general exercise dosing for people with cerebral palsy (see the list below):
**Please note that this information is for general education purposes only. Consult with your doctor and healthcare team for specific information about how to get started or safely continue an exercise program uniquely designed to meet your needs.
- A minimum frequency of two to three times per week
- an intensity between 60 and 95% of peak heart rate
- A minimum of 20 minutes per session for at least 8 consecutive weeks when training 3 times per week or for 16 consecutive weeks for training 2 times per week.
- A pre-work out warm-up and cool-down could be added to reduce musculoskeletal injury
Larger medical centers often have daily outpatient rehabilitation programs, which can increase independent movement for patients as they go about their daily lives. If traveling to a large rehabilitation center is not an option, then a local physical therapy clinic should provide a basic home exercise and stretching program tailored to individual needs. Check out this New Zealand woman’s story. With the help of a personalized exercise program, 62 year old Cecelia Hawke is back on our feet for short distances after 11 years.
During neurorehabilitation therapy, a physical therapist, occupational therapist, or speech therapist can assess function and advise on a home exercise program with adaptive fitness recommendations such as using a handcycle to promote aerobic fitness. In addition, therapists will be able to assist with identifying potential mobility aids to offer relief from pain and encourage continued access to the community. Professionals from these centers generally have more experience with neurological conditions like cerebral palsy than a commercial therapy center that mainly deals with orthopedic problems related to sports injuries and joint replacements.
For more information, download our free cerebral palsy tool kit.
- Online fitness organization Staying Driven offers all-inclusive adaptive training classes for a low monthly cost and there are more adaptive programs coming online from adaptive dance to adaptive yoga programs and more!
- The National Center on Health, Physical Activity and Disability (NCHPAD) is a public health practice and resource center with information on programs, organizations, and equipment opportunities nationwide. Likewise, the National Sports Center for the Disabled (NSCD) provides adaptive equipment, technology, and coaching methods for the differently-abled.
- As you navigate adulthood with CP, seek various solutions for your symptoms and care and take time to consider and research a particular doctor’s advice, a suggested program, or therapy. Over time, you will learn about the programs that exist to help you access services, the types of therapies available, and the scope of your insurance coverage, and your state’s resources.
References and Sources
- 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.
- Gannotti, M., Thorpe, D., Hurvitz, E., Noritz, G., Msall, M., Sennett, B., . . . Gross, P. (2020, September 21). Free papers; C5; Impact of pain location, intensity, and interference across the adult life course: Pilot findings from the Adult Cerebral Palsy Patient Reported Outcomes Registry. Retrieved June 14, 2021, from https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.14661
- Ueda, S., & Ando, N. (2000, June). Functional deterioration in adults with cerebral palsy. Retrieved June 14, 2021, from https://pubmed.ncbi.nlm.nih.gov/10868725/
- Peterson, M., Ryan, J., Hurvitz, E., & Mahmoudi, E. (2015, December 1). Chronic conditions in adults with cerebral palsy. Retrieved June 14, 2021, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4862577/
- 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/
- Verschuren, O., Smorenburg, A., Luiking, Y., Bell, K., Barber, L., & Peterson, M. (2018, June). Determinants of muscle preservation in individuals with cerebral palsy across the lifespan: A narrative review of the literature. Retrieved June 14, 2021, from https://pubmed.ncbi.nlm.nih.gov/29392922/
- Vogtle, L. (2021, June 14). Cerebral palsy and functional decline. Retrieved June 14, 2021, from https://cprn.org/cerebral-palsy-functional-decline/
- Whitney, D., Bell, S., Whibley, D., Van der Slot, W., Hurvitz, E., Haapala, H., . . . Warschausky, S. (2020, August). Effect of pain on mood affective disorders in adults with cerebral palsy. Retrieved June 14, 2021, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7955588/
- Whitney, D., Hurvitz, E., Devlin, M., Caird, M., French, Z., Ellenberg, E., & Peterson, M. (2018, September). Age trajectories of musculoskeletal morbidities in adults with cerebral palsy. Retrieved June 14, 2021, from https://pubmed.ncbi.nlm.nih.gov/29981509/
- Peterson, M., Whitney, D., Gross-Richmond, P., & Hurvitz, E. (2019, October). Total and regional body fat status among children and young people with cerebral palsy: A scoping review. Retrieved June 14, 2021, from https://pubmed.ncbi.nlm.nih.gov/31237080/
- Background interviews with Michele Shusterman and Dr. Jeff Derbas
- University of Michigan Health System. (2015, December 01). Adults with cerebral palsy more likely to have chronic conditions, researchers find. Retrieved June 14, 2021, from https://www.sciencedaily.com/releases/2015/12/151201125812.htm
- AACPDM. (2021, March 25). Physical fitness and exercise for adults with cerebral palsy. Retrieved June 14, 2021, from https://www.aacpdm.org/UserFiles/file/fact-sheet-fitness-083115.pdf