Erica is a 35-year-old massage therapist with two young children. She also has spastic diplegia, a common form of cerebral palsy (CP). Erica was born 10 weeks premature and adopted as an infant. Unlike many other preemies, she didn’t catch up on her growth, and she was diagnosed with CP when she was 18 months old.

“My parents were told to institutionalize me in 1979,” she says. “Last year, I ran four half, and two full, marathons. I proved them all wrong.”

What is CP?

CP is a group of conditions involving brain injuries that occur early in life: prenatally, during birth, or in early infancy. It is diagnosed about 10,000 times per year. In spite of great efforts to reduce the rate of CP, its incidence has remained stable for several decades. This is probably due to the fact that more premature babies survive today than ever before, and these babies are particularly at risk for the kinds of injuries associated with CP.

The official definition of CP has been updated recently: “A group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.”¹

First documented in the 1860s by British surgeon William Little, “Little’s disease” was later identified to be spastic diplegia, one of several forms of CP. It was once thought to be due to accidents during childbirth, but fewer than 10 percent of all CP cases are related to birth trauma. More often, CP is due to abnormal development of the cerebrum, complications of maternal infection, Rh incompatibility, toxic exposure, or bleeding in the brain due to vascular malformation or maternal hypertension. Postnatal causes include head injury, jaundice, and seizures. CP happens most often among infants with very low birth weight (under 5.5 pounds) and prematurity (less than 37 weeks of gestation).

Forms of CP

The terms used to describe types of CP indicate motor symptoms and what part of the body has been affected. Here is a short list of CP descriptors: 

• Ataxic: Problems with balance and coordination.

• Athetoid: Involuntary writhing movements of the face, trunk, arms, and legs.

• Di: The upper or lower body is affected; the lower body tends to be affected more often than the upper body.

• Hemi: The left or right side is affected.

• Paresis: Weakness.

• Plegia: Paralysis.

• Spastic: Pathologically tight muscles; flexors win over extensors.

• Tetra: All four limbs are affected.

So in the spastic diplegia recognized by Little, the patient experienced spastic paralysis of either the upper or lower body. Erica’s case involves problems with her legs, and she has a tendency toward making constant fists with her hands, even when she is relaxed.

“I think that’s why I’m such a strong massage therapist,” she says. “Giving counter-pressure feels kind of soothing to me. I am a 4’ 11” skinny woman, but people say I feel like a big, burly man. I have the strongest hands.”

Many people with CP face challenges beyond problems with motor control. About two-thirds of CP patients have some cognitive disability. Half of them experience seizures. Delayed growth is common, along with spinal deformities, including hyperkyphosis, hyperlordosis, and scoliosis. Motor control problems with the musculature of the face can lead to communication challenges, drooling, and serious skin problems. Incontinence related to poor muscle control is another common challenge. People with CP who can walk often experience stiffness in their legs, leading to a characteristic and inefficient “scissor gait.” Many of these problems can become worse over time, so although the CP itself does not progress, its consequences may. And because some of these complications may be unsightly, people with CP are often socially isolated, a phenomenon that appears to make many symptoms worse.

CP in Adults

Until the mid-20th century, most people with CP didn’t make it out of their teens. Nowadays, 65–90 percent of CP patients live to adulthood, although they tend to be vulnerable to premature aging; some organ systems, especially the cardiovascular and respiratory systems, often don’t operate at full capacity, and muscular activity appears to take a greater toll on people with CP than it does on the general population.

While the improved life span for people with CP is great news, it comes with a lot of unanswered questions. CP has always been considered a child’s condition, and all of its treatment options and strategies have been designed for children. The physical therapy, occupational therapy, surgical options, and drug treatments for CP were developed to help children achieve the maximum level of independence possible. But these strategies have not taken into account the needs of a person with CP who is in his 30s, 40s, or 50s.

Polls and surveys of adults with CP who do not have cognitive disabilities reveal some disturbing information. Patients making the transition from childhood to adulthood often find that their access to health services dries up, just as their need for therapies to deal with long-term problems is becoming known. Not all people with CP lose the ability to walk. If they do, it’s usually around age 25, because overuse syndromes and early joint degeneration become insurmountable. About 77 percent of adults with CP have problems with spasticity, 80 percent have muscle contractures, 18 percent have pain every day, and 18 percent live on full disability benefits. On the other hand, 24 percent work full-time.² 

Another study that followed CP patients from childhood into adulthood over a seven-year span found that more than half reported deterioration in their ability to walk, and their pain frequency and intensity increased over time. Problems with balance were the major factor that led to a decrease in walking ability.³

Finally, CP patients list hard-to-treat pain, fatigue, imbalance, and weakness as the leading factors in living with this condition as an adult. These were followed by numbness, memory loss, shortness of breath, and vision loss.⁴

What these surveys suggest is that the treatment goals for people with CP that are instituted in childhood may not serve the needs of adults. It is clearly time to revisit how cerebral palsy is approached in order to plan for the longest, healthiest possible lifespan with this challenging condition.

Implications for CP Treatment

It’s astounding just how much isn’t known about how a person with CP can set up for a healthy, functional adulthood. One of the most challenging parts of this puzzle is that CP affects people in such different ways. One person may have no mental dysfunction but very limited use of his muscles, while another may live with severe cognitive disability and seizures, but have only mild motor impairment. Clearly each of these individuals requires very different strategies for the best outcome.

We are only just beginning to explore how best to treat CP to plan for a healthy adult life, but changes are beginning to take hold. For instance, if a child was a candidate for surgery to correct bony misalignments and muscle contractures, it used to be considered best to do all those procedures at the same time. More recently, doctors have realized that it is better to stagger these surgeries in order to take best advantage of the growing process.⁵ Orthopedists now question whether CP patients who have total hip replacements might do better with a differently formed prosthesis, because they appear to be more prone to postsurgical dislocations than the general public.⁶ More refinements in CP treatment and long-term coping strategies to achieve and maintain independence may follow as we learn more about exactly what processes occur with adults who have cerebral palsy.

Erica’s medical history includes surgery to lengthen her right Achilles tendon at age 7, bilateral fusions of the great toe at age 14, and a spinal fusion with rod, screws, and bone graft to correct a damaged disc at age 22. Two years ago, she had a bout with kidney cancer, which didn’t slow her down much, but this year’s stress fracture in one foot followed by a torn tendon in the other foot has seriously impacted her well-being. 

“I’ve been on crutches for three months,” she says. “I’ve stopped running and started swimming. But I have never felt so defeated.”

Massage Therapy for Adults with CP

Children with CP have better access to all kinds of health-care interventions than adults, including massage therapy. Surveys indicate that most children with CP receive massage either from a professional or a family member.⁷ Many massage therapists are happy to work with this special juvenile population, but few of them expand that reach into the adult community. The number of massage therapists who count themselves comfortable with working with adults who have CP is low indeed.

This is a frustrating situation. Right now, 400,000 adults with CP are living in this country. Many of them can’t walk, and the ones who can are at risk for losing that ability. Their most common problems—acute and chronic pain, fatigue, balance problems, and weakness—can be successfully addressed by massage therapy. This short video demonstrates how just a few minutes of massage, even in subfreezing weather and through multiple layers of clothing, can make an immediate and discernible change in ease of walking of an adult with CP: http://bit.ly/NmS4ot.

Massage therapy carries some risk for CP in adults, as it does in children. Patients may use medications that impact our choices: Botox injections, muscle relaxants, pain relievers, and other substances require some adaptation for bodywork. CP patients may undergo surgery, and this also requires some adjustments. And of course, numbness and difficulty with communication always call for special sensitivity from a massage therapist.

However, the benefits of massage therapy for adults with CP far outweigh the risks. We can work with proprioceptors to reeducate functioning muscles and improve balance (an important factor in prolonging the ability to walk); we can help improve efficiency of movement for better stamina; we can help reduce pain and fatigue; we can become part of an important network of supporters for people who tend to live in social isolation. But perhaps the most precious benefit we can offer is the experience of being touched, rather than handled—this can be a rare gift for anyone who lives with a chronic, serious condition.

“People with CP really know their bodies,” Erica says. “They can give absolutely phenomenal feedback. Trust them.”

If working with adults who have CP is of interest to you, I encourage you to pursue this specialty. Check with your local resources. Alert your network of primary care providers that you would be happy to make yourself available to their patients. Unfortunately, not many educators teach workshops on working with neurological disorders, but if one comes your way, don’t miss it. Above all, make yourself available. See if your town hosts a CP support group, and visit them. This is an extremely underserved group, and it would be great to see massage therapists step up to this challenge. 

Notes

1. A. Opheim A et al., “Walking Function, Pain, and Fatigue in Adults with Cerebral Palsy: A 7-year Follow-Up Study,” Developmental Medicine & Child Neurology 51 (2009): 381–8. 

2. C. Andersson and E. Mattsson, “Adults with Cerebral Palsy: A Survey Describing Problems, Needs, and Resources, with Special Emphasis on Locomotion,” Developmental Medicine & Child Neurology 43 (2001): 76–82.

3. A. Opheim, “Walking Function, Pain, and Fatigue,” 381–8. 

4. A. Hirsh et al., “Symptom Burden in Individuals with Cerebral Palsy,” Journal of Rehabilitation Research and Development 47, no. 9 (2010): 863–76. 

5. M. Bottos et al., “Functional Status of Adults with Cerebral Palsy and Implications of Treatment for Children,” Developmental Medicine & Child Neurology 43 (2001): 516–28.

6. K. Schroeder et al., “Long-Term Results of Hip Arthroplasty in Ambulatory Patients with Cerebral Palsy,” International Orthopaedics 34, no. 3 (2010): 335–9. 

7. G. Glew et al., “Survey of the Use of Massage for Children with Cerebral Palsy,” International Journal of Therapeutic Massage & Bodywork 3, no. 4 (2010): 10–15.

Author’s note: The author wishes to extend a special thanks to Erica, who generously shared her experience of being an adult with CP who is also a massage therapist, and to Pam Fitch and Matt O’Meara whose video is so inspiring.