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Maximizing Activities for those with Cerebral Palsy

The below article is from the CDC's website.

Attaining and Retaining Mobility: Clinical Issues

Margaret A. Turk

FOR YEARS, children with disabilities and their families have been told that mobility and other musculoskeletal problems stabilize for the most part by early adulthood. However, as more people with lifelong mobility impairments live to and through their adults years, it is apparent that mobility and musculoskeletal changes commonly continue into adulthood. In fact, questions and concerns about mobility change and pain are common among the majority of adults with mobility impairments caused by any etiology (Seekins & Clay, 1991). These changes may be a part of the dynamic aging process, may be related to the primary disability (as in a secondary condition), or may be the consequences of personal choices for daily activities.

Cerebral palsy and spina bifida are conditions that represent mobility impairments and account for the majority of mobility impairments of congenital onset. In fact, cerebral palsy is defined as a motor impairment. Each primary condition has associated conditions that may be seen in a person with that primary condition. These associated conditions may also be considered primary impairments. For cerebral palsy, the list of associated conditions includes seizures, learning disabilities, mental retardation, sensory problems, and oral motor and communication problems, to name a few.

Some conditions associated with the diagnosis of spina bifida include neurogenic dysfunction of the bladder, neurogenic dysfunction of the bowel, learning disabilities, and seizures. Persons with cerebral palsy or spina bifida may have any combination of associated conditions, all of which ultimately affect their functional capabilities. Secondary conditions, therefore, may include progression of pathology or impairment either through complications or through the dynamic aging process.

Aging is a conception-to-death series of developmental changes that impact the person's ability to respond to the demands of the environment (Machemer, 1993). During the early stages of aging (infancy, childhood, adolescence) attainment of skills and capabilities is on the rise; in the middle stages (adulthood) maintaining and retaining function is the focus. It is only in the later stages of life that function declines, if disease is not a factor at any of these stages. A recent theory also suggests that aging is a genetically driven process. It is generally assumed that this same sequence (with genetic direction) is followed in all people. However, the interaction of aging and lifelong impairments is not known. It is clear, however, that both cerebral palsy and spina bifida are dynamic processes.

There is little published information about aging issues and secondary conditions among persons with mobility impairments, specifically, persons with cerebral palsy and spina bifida. Nor is there much information about the impact of commonly practiced interventions over a lifetime. There is more recent information comparing functional capabilities in adults and young adults with differing interventions, or evaluating possible risk factors. However, health care providers and adults and their families generally have a limited base of knowledge from which to draw regarding adult health issues and changes in function. There is also limited clinical and anecdotal information that may be useful.


Generally, mobility issues are addressed through therapies, orthopedic surgery, spasticity management, orthotics, and adaptive equipment. Each of these interventions is used individually or in some combination to help a child with a mobility impairment achieve some level of independent mobility. The fact that development impacts on function is well known, but how it interrelates with personal and social attitudes as well as personal choices is discussed only anecdotally in the literature and without clear definition.
Functional outcome has not yet been documented over a lifetime, although reports do discuss survival or outcome in adults and young adults (Charney, Melchionni, & Smith, 1991; Evans & Alberman, 1990; Hunt, 1990; Klapper & Birch, 1966; Kudrjavcev, Schoenberg, Kurland, & Groover, 1985; Liptak, Shurtleff, Bloss, Baltus-Hebert, & Manitta, 1992; McDonald, Jaffe, Mosca, & Shurtleff, 1991; Sherk, Uppal, Lane, & Melchionni, 1991). We need to be much more functionally oriented.

Although physical and occupational therapy are well accepted as an important element of success in achieving or maintaining mobility, the specifics of therapy (techniques, duration, schedule, and so forth) are not well determined as they relate to long-term functional capabilities. There also is a now relatively well-accepted concept of functionally directed services that includes recognition of energy costs (Agre et al., 1987; Franks, Palisano, & Darbee, 1991), need for directed and ongoing exercise (O'Connell, Barnhart, & Parks, 1992) and choice of options by children and their families.

The orthopedic literature discusses the postoperative function of children after surgical procedures; however, the time course is often short, six months to several years. We do not know much about the long-term results or the con-founding factors. More recent studies that look at a range of ages including adults and young adults (in small numbers) with spina bifida question some of the long-held beliefs about hip and knee surgery (Broughton, Menelaus, Cole, & Shurtleff, 1993; Crandall, Birkebak, & Winter, 1989; Wright, Menelaus, Broughton, & Shurtleff, 1991). The long-term benefit of surgery for children with cerebral palsy is also under investigation. Orthopedic surgery continues to be recognized as an important aspect of intervention, although options or timing for surgical intervention has changed somewhat over recent years.

Spasticity management at one time consisted of medications and blocks. Although each of these has its place, more recent management includes selective posterior rhizotomy (McDonald, 1991), baclofen pump (Albright, Cervi, & Singletary, 1991), and selected botulinum toxin injection (Koman, Mooney, Smith, Goodman, & Mulvaney, 1993). Each procedure has its advocates; however, long-term benefits have not yet been established.
Orthotic and adaptive equipment also are a part of the equation to achieve independent mobility. Some of the issues regarding these are addressed in Bergman's presentation.

The use of spinal cord and muscle stimulation has been promoted and refuted as a treatment strategy to improve function for children and adults with cerebral palsy and spina bifida. There is anecdotal information on a case-by-case basis supporting its use, but no scientific study has found this strategy effective or has determined for which populations this might be effective.

There has also been recent interest in better prognostication for long-term function, particularly in the realm of mobility. In spina bifida specifically, many studies support the concept of functional grouping by muscle strength rather than neurosegmental level (Klapper & Birch, 1966; McDonald, Jaffe, & Shurtleff, 1986; McDonald, Jaffe, Shurtleff, & Menelaus, 1991). In both cerebral palsy and spina bifida, the impact of cognitive function is also recognized.


Functional Change

Change in mobility is a common complaint of adults with mobility impairments. The reasons for change are varied and may include those related to age changes (decreased endurance, flexibility, strength, or balance), progressive pathology or secondary conditions (pain, contractures, spasticity, osteoporosis and fractures, tethering, stenosis), or personal choices (use of powered mobility to conserve energy). The change in mobility is often a response to a secondary condition or age-related change. Falls may also be such a response. Significant change in mobility or falls should not automatically be accepted as a part of cerebral palsy and spina bifida in the adult years.
The personal and social impact of functional changes in mobility for adults with cerebral palsy or spina bifida are not addressed herein. However, this aspect cannot be ignored , nor easily separated from discussions of recognition of change and its meaning for independence. Throughout life, many expectations are raised for the person with cerebral palsy or spina bifida by parents, professionals, peers, and the person himself or herself-expectations about achieving independence in mobility, usually walking. Changes in these hard-earned achievements can cause a significant emotional overlay that must be addressed.

Age-Related Changes and Exercise

Information about age-related changes in a nondisabled population is available in the literature. The rates of aging and its implications for function differ widely among individuals. Different organ systems age at different rates. For instance, there is a greater decline in breathing capacity (10%) than nerve conduction velocity (unchanged) from ages 30 to 40; these declines reach 60% and 15%, respectively, at age 80 (Katzman, 1983). Complex activities (e.g., running) will show greater changes with aging because of the coordination and integration of functions (endurance, sequence of muscle activity, balance, vision, and so forth). Physical work capacity decreases with age, and regular exercise can improve fitness at any age (Clark & Siebens, 1993). Generally, muscle strength is maintained during the adult years, although work rate may decline (Katzman, 1983).

Strengthening can occur at any age, but flexibility tends to decrease with age. The issues of arthritic changes are complex, however; degenerative joint changes in weight-bearing joints are universally noted by age 60 in both genders, probably because of the wear and tear. Any predisposing factors (occupational activities, congenital joint malalignment, hereditary trends) may modify the onset or progression of arthritic changes. Postmenopausal osteoporosis (20:1 female predominance, onset age 55-70) and senile osteoporosis (2:1 female predominance, onset age 75-90) are age-related changes that become clinically apparent with fractures. Prevention strategies include diet, estrogen, falls prevention, and directed activity, and the effectiveness of these strategies is being evaluated.

The impact of these known aging processes on a person with a mobility im-pairment is not well understood. It is, however, known that persons with mobility impairments use more energy to move than their nondisabled peers (Williams et al., 1983). It has only recently been acknowledged that adults with congenital or childhood-onset disabilities may show typical musculoskeletal aging changes, possibly earlier than their nondisabled peers (Dunne, Gingher, Olsen, & Shurtleff, ca. 1984; Overeynder, Turk, Dalton, & Janicki, 1992). This is suspected but not yet proven. There may also be risk factors that predispose a person to these changes, but they, too, are as yet unproven. If these earlier-than-expected aging changes are confirmed, they may be considered secondary conditions.

Considering what is known about exercise and activity in the population as a whole, there may be information that can be applied to people with mobility impairments. Benefits of a regular exercise program include more efficient heart and lung function (fitness), weight reduction, improved mood, and improved sleep. It is also known that persons must be judicious in participating in exercise programs. Young adults who started regular exercise involving repetitive joint-loaded activities (e.g., jogging, running) more often discontinued the exercise because of joint pain than did those persons who started an exercise program in their middle years.

These exercise principles have been applied to other disability groups with positive results (Fernhall, 1993; Figoni et al., 1991; Glaser, 1989). Of course, care must be taken in prescribing exercise for persons with impaired mobility; they should participate in an appropriate program of exercise or activity, keeping in mind especially their possible predisposition toward arthritic joint changes. Adults with cerebral palsy tend to report perceived changes in balance and then fear of falling (Overeynder et al., 1992), which usually improved with a general fitness program.
Generally, adults and young adults with mobility impairments do not participate in routine fitness or exercise programs. This is as much because of the limited knowledge in this area as it is a result of the attitudes of care providers and persons with disabilities.

Progressive Pathology or Secondary Conditions

These conditions are not the associated conditions (seizures, mental retardation, neurogenic dysfunction of the bladder, and so forth) seen in persons with cere-bral palsy or spina bifida. The symptoms and pathologies are conditions that may be insidiously progressive or have onset in late adolescence, early adulthood, or adulthood. With better supporting information, some of the clinically reported earlier-than-expected aging changes experienced by persons with cerebral palsy or spina bifida may be considered secondary conditions.

Pain is the most common complaint of adults with mobility impairments, and therefore also of adults with spina bifida (Dunne et al., ca. 1984) and cerebral palsy (Overeynder, Janicki, & Turk, 1994; Turk & Machemer, 1993). Pain may be present for a variety of reasons, and onset may be acute, recurrent, or chronic. Any episodes or complaints of pain must be noted by the adult with the mobility impairment or the health care provider or both, and evaluation, diagnosis, and intervention should ensue.

Most people report "arthritis" as the cause; however, the pain may be either joint or muscle pain. Joint pain is likely related to unusual stresses during walking or other loaded activities (e.g., propelling a wheelchair) on normally or abnormally aligned joints, and there may be an arthritic component. Degenerative changes have been noted radiographically in dislocated and subluxed hips, changes that are not always related to weight-bearing activities in persons with cerebral palsy (Bagg, Farber, & Miller, 1993).

Femoral head resection as a treatment strategy for control of pain in hip disease for persons with cerebral palsy is being reviewed (Perlmutter, Synder, Miller, & Bisbal, 1993). Joint fusion has been an accepted intervention in the past, although there may be a negative impact on positioning or function. Muscle pain or tendinitis may be the consequence of functional activities and repetitive motions. Muscular pain is often noted by adults with spasticity as they age, and the spasticity often increases in response to pain.

Appropriate management includes initial identi-fication of the problem, traditional interventions (analgesics, anti-inflammatory medications, therapy modalities), and re-evaluation of functional activities. There has been recent discussion of total hip replacements as a treatment option for hip pain from severe arthritis in adults with cerebral palsy; lifelong efficacy is still not known (Buly, Huo, Root, Binzer, & Wilson, 1993). It is most important to decide upon treatment strategies on the basis of a person's function, with input from that person or the care provider.

Nerve entrapment may also be a cause of pain. The most common nerves and areas of entrapment reported by adults are those susceptible to compression in the nondisabled population: the median nerve at the carpal tunnel and the ulnar nerve in the hand distally and at the elbow proximally. Compression points are often related to the use of crutches, transfer techniques, and propelling wheelchairs. Work-related activities may also cause entrapments, as in the nondisabled population. However, all hand pain or sensation change does not always represent nerve entrapment.

Appropriate diagnostic testing must be used to determine entrapment as a cause, including electrodiagnostic testing.

There is no information that notes an increased prevalence of nerve entrapment in adults with cerebral palsy or spina bifida. Treatment options are no different for disabled and nondisabled adults; however, some modifications or planning are required if functional independence is changed by or during the treatment.

Osteoporosis is a secondary condition associated with mobility impairments and in the literature is referred to as Type III or secondary osteoporosis. This is not the osteoporosis associated with aging (postmenopausal or senile), but a condition noted much earlier in the lives of persons with mobility impairments. Both weight-bearing and physical activity play a role in this. Other confounding factors of osteoporosis among those whose mobility is impaired include poor nutrition, certain medications (phenytoin or barbiturates may be used by persons with cerebral palsy or spina bifida), and endocrine-related problems.

Secondary osteoporosis is a known problem in persons with spina bifida and in persons with cerebral palsy who are categorized as having a severe form and have no effective unsupported weight bearing. In fact, it has been shown that muscle activity in spina bifida is a more important determinant than weight bearing in persons with spina bifida (Rosenstein, Green, Herrington, & Blum, 1987). It has never been proven that passive supported standing has any positive effect on osteoporosis. However, it is fractures (usually of the extremities and not of the vertebrae, as seen in postmenopausal or senile osteoporosis) that often are the first sign of problems with osteoporosis.

Unfortunately, treatment options for fractures are often limited because of the poor response of severe osteoporosis to healing with casting or surgical plating. Pain management is of utmost importance, and the impact of functional changes resulting from the fracture or the treatment need to be addressed. Of course, early recognition of osteoporosis or its risks is the best management for prevention of fractures or of managing the nonmobility related causes. Prevention of falls is an important aspect of management.

Increased spasticity, weakness, falls, or progression of contractures or de-formities can often be indications of pain. The causes of pain noted above must be considered; however, these changes can also represent more significant pathology. In persons with spina bifida, the presence of a tethered cord or syringohydromyelia must be considered. Tethered cord is suspected in all persons who had immediate closure of the defect (Venes, 1985). Symptoms include change in bladder or bowel habits, leg weakness with change in sensory level, spasticity, pain (usually backache), and progressive scoliosis or foot deformities.

In adults there is usually an antecedent event to exacerbate the symptoms, as in direct trauma to the back or buttocks; there is diffuse leg pain with referral to the anorectal area; and there is change in bladder or bowel habits. There is usually not progressive deformity noted as in children (Pang & Wilberger, 1982). Diagnosis is made through evoked potentials, urodynamic studies, and imaging or ultrasound. However, recent studies actually report the presence of tethering, cord thinning, lipomas, cavities within the cord, and diastematomyelia in asymptomatic persons with spina bifida, so comparative studies that show change are most helpful (McEnery, Borzyskowski, Cox, & Neville, 1992). Treatment consists of neurosurgical intervention.

In persons with cerebral palsy (and possibly with spina bifida), spinal stenosis must be considered when functional change is noted. Cervical spine stenosis has been found as a cause for change in or loss of walking skills, increased leg spasticity, change in bladder habits, neck pain, vague sensory changes, and (later) change in arm and hand function in adults with cerebral palsy (Reese, Msall, Owen, Pictor, & Paroski, 1991; Turk & Machemer, 1993). There may also be a tethering effect on the spinal cord, and cranial nerve changes may be seen. Initial reports noted a higher risk in those with an athetoid component (Fuji et al., 1987; Kidron, Steiner, & Melamed, 1987).
However, more recent reports show that it is present in spastic forms of cerebral palsy as well. The cause is theorized to be secondary to early arthritic changes, but there may also be a predisposition to spinal stenosis in those with a congenitally narrow canal. Diagnosis is made through imaging, although comparative evoked potentials may be helpful. Neurosurgical intervention prevents further loss; however, postoperative management needs to consider change in functional capabilities and care needs, including the impact of an athetoid component and possible change in head position and neck mobility.

For each of these secondary conditions, environmental accessibility and assistive devices may be needed to relieve symptoms or enhance function.


To maintain their daily routines, adults with mobility impairments often make a change in their independent mobility to conserve energy. Although these are functional changes, they may not represent pathology. However, these changes may represent some of the aging issues. Participation in a fitness or exercise program should be considered. Simply maintaining a daily activity will not enhance endurance or strength beyond that activity. For instance, independent transferring maintains shoulder strength for that activity; it does not prepare one to perform continuous weighted activities above the head. However, just as in the nondisabled population, priorities for persons with cerebral palsy or spina bifida may not include exercise and fitness. Personal attitudes (of the person with cerebral palsy or spina bifida or their personal support system) may have to change before a person with impaired mobility will consider such activities or be supported in them.


Adults with mobility impairments are generally healthy individuals. Not all adults have serious health problems, and many recognize the aging process as a natural course of events. Prevention strategies require knowledge of expected changes or possible risk for changes, recognition of changes that alter function and require intervention, and an understanding of interventions that impact on function. Persons with mobility impairments and health care providers should both be prepared for these issues.

The responsibility for appropriate health care belongs to the consumer and the health care provider. The consumer should be prepared for appointments, particularly to report changes in function. The consumer must maintain a baseline for his or her functional capabilities, complete with known pathologies. Likewise, the health care provider should be prepared to listen to the consumer's concerns and make appropriate recommendations. The health care provider can also edu-cate the consumer about possible future needs or prevention strategies. The expectations of both the consumer and the provider in the interaction must be made clear. A partnership is a necessity for appropriate health care delivery.

It is also time to reconsider the model of illness and disease for persons with lifelong disabilities. Particularly in the realm of mobility, a health and wellness model should be developed. Programs of fitness and exercise have been proven beneficial in nondisabled groups and certain disabilities groups. Health-directed services must be promoted.

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Margaret A. Turk, M.D., is Associate Professor, Department of Physical Medicine and Rehabilitation and Department of Pediatrics of the College of Medicine, SUNY Health Science Center, in Syracuse, New York.



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