A number of studies of health and function have found a deterioration in adolescents and adults with cerebral palsy (Thomas et al. 1989; Wilner 1996; Bottos et al. 2001; Bottos & Gericke 2003). However, many recent studies are more optimistic.

McCormick et al. (2007), using the Gross Motor Function Classification System (GMFCS; Palisano et al. 1997), found that 91% of 33 children who were walking without aids (GMFCS Levels I and II) at around age 12 years were still walking without aids at about age 22. They also found that 96% of 48 children who were using a wheelchair as their primary or only mode of mobility (GMFCS Levels IV and V) at the age 12 years were still wheelchair users at about age 22.

Day et al. (2007) made a retrospective study of walking in 7550 adolescents and 5721 young adults. Their graphs show that children with cerebral palsy with mean age 10 years, who walked well alone (GMFCS Levels I and II), had a high likelihood (77–89%) of still doing so over the next 15 years. They also found that 54% of children who walked well but needed some assistance in climbing stairs (GMFCS Level II) stayed the same until age 25. Those who changed were equally likely (23%) either to decline in walking or to improve in stair climbing. Children who walked only with support or unsteadily (GMFCS Level III) but did not use a wheelchair had only a small chance (11%) of losing walking (ambulation), whereas those who used a wheelchair were more likely (34%) to lose walking.

In adults with mean age 25 years, the graphs of Day et al. (2007) also show that 71–84% of those who walked well alone (GMFCS Levels I and II) were still doing so over the next 15 years. The graphs also show that of adults in GMFCS Level III who did not use a wheelchair, 15% achieved stair climbing by age 40 whereas 11% lost walking by that age.

Strauss et al. (2004), in a study of 904 adults aged 60 years, found that 60% were still walking alone or with support. By age 75, 40–50% of those survivors who had walked well alone at age 60 could still walk but with a decline in skill. They also frequently lost the ability to dress themselves completely. Nevertheless, other skills of speech, self-feeding and ordering meals in public were well preserved. These research workers note that their subjects were more severely disabled than people with cerebral palsy as whole.

Andersson and Mattsson (2001) found 79% of 77 adults with spastic diplegia had achieved walking ability with or without aids, but of these, 51% claimed that their walking ability had decreased in recent years and 9% said that they had stopped walking. The reasons reported by these adults for deterioration of walking included decrease in muscle strength, in balance and in their condition. Experience with adults is that either therapy services are focused on children or they are tired of physiotherapy. They found that a specific strengthening programme showed positive results. MacPhail and Kramer (1995) also demonstrated improvement in function and walking following strength training.

Butler and Darrah (2001) pointed out that neu-rodevelopmental physiotherapy showed no general agreement on the long-term efficacy of focusing on achieving walking.

All these studies generally give a mostly encouraging picture, compared to past views. Prognoses for walking in older people have improved where services and physiotherapy methods together with psychological and social factors have developed for adolescents and adults. Walking may become more difficult for those who develop contractures, joint problems and a decrease in strength, as well as in the presence of fatigue. Prognosis for walking in children is discussed in the section on ‘Development of standing and walking’ in Chapter 9.

Pain. This can be due to many factors. There are abnormal biomechanics causing joint and muscle pain. Excessive range of athetoid motion and muscular dystonia can cause spondylosis of the neck or arthritic changes in joints. There may be overuse syndromes in efforts to keep dealing with daily life (Pimm 1992). Inability to change postures increases joint and muscle pains and skin pressure points. Hodgkinson et al. (2001) found hip pain the main concern of non-walking adults with cerebral palsy. Abnormal shoulder girdle postures, especially if pulling in a downward direction, may cause nerve traction. New health problems related to ageing, such as urinary and bowel problems, can cause severe discomfort.

Pain may not receive adequate medical attention or may not be reported by the individual owing to inexperience or due to communication difficulties of cerebral palsy. This also applies to many other health problems in cerebral palsy.

Fatigue. Many are functioning and moving at their peak of performance with little rest. Locomotion is at a high physiological cost for both health and neuromotor problems. The older person is unaccustomed to working out strategies to conserve their energy. For example, the effort to speak need not accompany movement which makes greater energy demands. Distances may be better managed with wheelchairs rather than walking so that energy is conserved for any social or other activity desired by the person. Adults significantly reported more physical but not more mental fatigue than the general population in Norway. They suggest that it is the challenges of work and daily life rather than motor impairment that create fatigue (Jahnsen et al. 2003). Early loss of walking can be attributed to the fatigue and high energy cost of having to make efforts to walk (Bottos & Gericke 2003).

Early and minor deterioration. This is often not detected by the person and increasing compensatory motor patterns are therefore used to ‘keep going’. These motor patterns can cause increased deformities, stiffness and pain, which add to the person’s fatigue. Speech and swallowing problems also increase in some and they may need regular monitoring by a speech and language therapist and medical practitioner. Swallowing problems (dysphagia) are reported mainly in people with athetosis (dyskine-sia/dystonia).

Urinary problems appear in older persons because either their locomotion has deteriorated and they cannot reach toilet facilities in time or there are bladder problems needing medical attention. Retention of urine is known to occur if adductor tightness has increased, and so initiation of urination is prevented.

Increased musculoskeletal deformities due to biomechanical changes, increased spasticity, weakness and disuse may occur as more time is being spent in sedentary academic or social activities. There is an increase in weight and height, which makes more demand on the neuromotor and musculoskeletal systems, leading to compensatory biome-chanical response which can result in deformities, pain and fatigue.

New environments of schools, homes and in the community offer new problems not easily overcome using familiar strategies. More help is needed due to a person’s increased size. The older person needs to be educated in how he can let people know what assistance is appropriate for him or her. Therapists’ communication skills need to be fine-tuned so they can let teachers, instructors, youth leaders and others know what the physical needs of older persons might be. Unless others are informed of what assistance is necessary, a person with cerebral palsy remains at home and cannot join in community activities, as ageing parents are unlikely to have the capacity to help him do so.

Discrimination in society. Teachers and social workers and disabled people themselves do assist in dealing with discrimination against people with disabilities in society. Therapists are involved in pressing for access, environmental adjustments and attention to other physical needs of the person with disability with whom they are working.

Services for older people. These have been poor and a link-person is really helpful in knowing what is needed and how to obtain health, educational and leisure opportunities and adapted physical activities. This is particularly needed during a child’s transition to adolescent and adult services. The need for therapy services is discussed below. Management is particularly important; though therapy needs may not be ongoing, management must be appropriate. This consists of postural management, especially in chairs and wheelchairs, standing frames, positions in bed and appropriate shoes with or without orthoses. Scolioses and other spinal postures need monitoring to avoid deterioration, pain and respiratory problems as well as additional difficulties for carers. Adult teams for adolescents and adults with cerebral palsy are being strongly recommended by many professionals, families and the individuals themselves (Thomas et al. 1989; Murphy et al. 1995; Bax 2001).

There are many older people who continue to be independent and do not wish to have therapy. They do, however, need monitoring if there are abnormal postures, pain and health problems to enable them to maintain their best level of function. Adults with cerebral palsy are living longer than in the past (Strauss et al. 2008).

Recent research on the growth and development of brain structures and neural pathways (Paus et al. 1999; Sowell et al. 2002) suggests that potential for learning continues to mature. Although Bottos and Gericke (2003) and others have considered that walking would deteriorate or not be expected in older people as it was not essential for a person’s lifelong rehabilitation, the Europe programme with teachers and therapists (MOVE Europe 2001) reported successful teaching of sitting, standing and walking in adolescents.

As many paediatric physiotherapists have focused on children, and plateaus of motor achievement have been reached by adolescence, further potentials have not always been adequately explored. In addition, social and educational needs have correctly received emphasis and time for specialised treatments discouraged (Goldkamp 1984; Cantrell 1997). However, when more up-to-date motor learning approaches are used, functions can be maintained or activated with particular emphasis on daily life activities (see Chapter 2).

The main motor functions needed in school, social situations and in the community are sitting, rising to standing, standing and walking, as well as hand function. This book offers many practical suggestions for learning these functions independently, with assistance or with equipment such as special chairs, wheelchairs, walkers and walking aids. Although ‘a child’ is given in the text, this can often be an older person with modifications for body size and weight.

Some individuals may still want to re-learn or learn to walk with or without appropriate walkers. Designs of walkers and equipment have developed since the person with cerebral palsy was much younger. This re-learning or learning may well be possible in the home and in some other environments. An individual may feel more independent, participate more in transfers and manage to exercise with a walker rather than remain seated most of the time. Individuals with severe motor disabilities may actively participate in their care by ‘bridging’ hips for dressing, rolling over, using minimal arm and hand actions or grasping a support. Participation by an individual with disabilities, no matter how minimal, avoids passivity and a feeling of helplessness.

Carers may also find an individual’s participation useful, especially if abilities in sitting, standing and stepping are maintained or trained. Carers may well be able to make less effort and save time. If an individual’s active participation is adequate, then this can minimise the demands on carers. The use of two carers may then not always be necessary. A manual handling assessment together with therapist and individuals is necessary to confirm this. There are electric lifters into standers and other hoists and equipment which need to be selected. However, they may not always be manageable in all environments. It is always important to explore the views of both carer and the individual with disability to assess what is realistic in different situations and to assess what potential for assisted or independent function is present in an older person.

If an individual is interested in having specific training sessions, and if these sessions draw on motor learning models, then they need to be supplied by neurological therapists together with teachers, carers or others involved with the individual (Umphred 2000).

Motor developmental assumptions

Some professionals consider that in older children, adolescents and adults, only training in sitting, standing and stepping functions is worthwhile because the individual no longer needs the child developmental sequences observed in prone or supine lying. Depending on the energy of an individual, this may be appropriate. However, the analysis of tasks needed by the older person involves the selected functional abilities observed in early child development, but they should nevertheless be age-appropriate and relevant to the task desired by individuals and carers.

All people need to turn in bed, get out of and into bed, and get up to sitting or standing from lying. All assisted or independent transfers involve selected elements of head control, reach and grasp, support on arms, half-roll or full roll-over, push up from lying to sitting with legs over the edge of the bed, lying change to supported upright kneeling and up to supported standing. It is especially valuable to have the ability to use early postures in a transitional phase in any sequences of rising from lying to sitting or standing. An older person can draw on the early childhood series of rising observed in prone or supine developmental stages in this book. Such early childhood patterns are the easier motor patterns and therefore may be more useful for an adolescent or adult with disabilities. Naturally there will be adaptations of postural stability, counterpoising and changing of positions so that the developmental sequences are modified according to an individual’s condition in specific environments. Generally, creeping, crawling, knee stepping and use of arms and hands in lying and floor sitting with and without equipment are not age-appropriate. Use of hands in lying in bed is naturally useful if an individual can pull up his blankets or use hand grasps to get into and out of bed or to switch off an alarm clock.

These are discussed in Chapter 11. The physiotherapist plays an important role in preventing secondary musculoskeletal problems and correcting as many as possible of those that are inevitable. Plaster casts are also used for the older person (Bertoti 1986; Mosely 1997). The tightness of spastic muscles appears to increase with age, especially as muscles become bulkier and do not grow as fast as bones. Botulinum toxin, baclofen and other muscle relaxants are used and need to be associated with a physiotherapy programme (see Chapter 11 on botulinum toxin injections).

Scolioses, pelvic obliquities and hip dislocations are more common in older people than in children (Strauss et al. 2004). Orthopaedic surgery is often indicated and surgeons have different approaches and post-operative physiotherapy regimes. Bony operations are often delayed until after growth spurts have ceased in adolescents.

Cervical problems may occur in athetoid (dyskinesia and dystonic) people due to excessive cervical lordosis in compensation for flexed spines or due to persisting involuntary movements of the head and neck (Levine et al. 1970). Botulinum toxin A injections have been used for neck dystonia and surgeons may suggest other procedures, though there are many difficulties.

Physiotherapy methods continue to be important, and prolonged stretching, positioning equipment, orthoses, range of motion exercises and position change are particularly recommended in the older age group. Active exercises, strengthening and actions within daily life activities need special attention. Rhythmic stabilisation and other methods from proprioceptive neuromuscular facilitation appeal to teenagers and adults as part of their strengthening and balance training. Damiano et al. (1995a,b), Dodd et al. (2003) and Damiano (2007) in their scientific studies firmly recommend strengthening. Andersson et al. (2003) used progressive strength training or heavy resistance with good results for people who were walking with or without aids. MacPhail and Kramer (1995) found strengthening improved function and walking. McBurney et al. (2003) carried out a qualitative study of the value of strength training from the perception of young people and their parents.

Stretching with manual methods for trunk and hips used in the Bobath Centre, London, are followed by the individual’s active maintenance of the new alignment in sitting and standing as well as by specific facilitated walking patterns (Christine Barber, personal communication, 2001). Conductive education groups for adults focus more on function than on deformities, though there are corrective movement synergies (Kinsman et al. 1988).

Young people who can understand are motivated by measurements of increased range, strength and number of times they can carry out an activity. They enjoy biofeedback training on force plates with video feedback of symmetrical weight bearing and weight shift, and other records of specific achievements (Winstein et al. 1989; Hartveld & Hegarty 1996).

Explanations are given to educate an individual about why motor activities are necessary to minimise the effect of growth spurts, disuse, increasing weight with immobility. Deterioration of motor functions may decrease confidence in physiotherapy. Young people need explanations such as that shorter spastic muscles are bulkier and tighter in older people, that growth spurts lead to bone growing faster than muscles and cause deformities, and that deterioration is not due to poor physiotherapy or primarily to their lack of practice. Unwitting habits of prolonged sitting in one posture or repetition of movements in only a few patterns may lead to deformities.

Physiotherapy treatment for aches and pains need to be offered and responsibilities for attending treatment appointments are given to those who need them.