Cerebral palsy in adults: ongoing care, ageing and rehabilitation

Cerebral palsy is a group of lifelong conditions affecting movement and co-ordination, caused by a problem in the developing brain before, during or soon after birth. NHS inform describes spastic, dyskinetic, ataxic and mixed types: spastic cerebral palsy involves muscle tightening, dyskinetic involves movements that shift between tight and floppy, ataxic involves shaky movement and poor balance, and mixed combines features.

Severity varies widely. Some adults have minor difficulties, while others use wheelchairs, communication aids or need daily support. Associated problems can include pain, fatigue, sleep problems, epilepsy, learning disability, bladder and bowel difficulties, constipation, drooling, vision and swallowing problems.

NHS inform describes secondary symptoms caused by the effect of the condition on the body rather than directly by the brain injury. These include tight joints and muscles, dislocations, changes in physical ability, changes in the amount of pain and increased fatigue. The NHS says bone and joint problems can get worse as people age, which may affect movement, and that people may need different care and support as they grow older.

In practice adults often notice that walking becomes more tiring, that a previously independent transfer now needs help or that new aches limit the day. These changes are reasons to ask for a review rather than to accept them as inevitable.

The NHS calls physiotherapy one of the most important treatments. Its aims are to encourage movement, increase strength and stop muscles weakening, and prevent muscles shortening and losing range, which can be painful and affect how bones and muscles grow. Physiotherapists also advise on walking aids and on arm or leg braces called orthoses.

NHS inform adds that orthotic devices support part of the body to improve the ability to move and be active, some being used short term and others for life, with the need changing over time. An orthotist examines movement and recommends devices to personal needs. Targeted physiotherapy can help to improve and maintain posture, coordination, strength and balance.

The NHS lists medicines for muscle stiffness such as diazepam or baclofen, which can be given as tablets or liquids, with baclofen sometimes delivered by a pump under the skin. Botulinum toxin injections relax selected muscles for a few months at a time. Other medicines can help sleep, epilepsy, constipation, pain and drooling, though it is unlikely that one person will need all of them.

Surgery may restore movement where tight muscle or connective tissue limits it, repair a dislocated hip, correct spinal curvature, treat bladder control problems or reduce leg stiffness through selective dorsal rhizotomy. The NHS advises talking to the care team about expected results, risks and recovery, which for some operations can take months or years with substantial physiotherapy. Our page on hand and arm surgery in cerebral palsy covers one operation type in detail.

Speech and language therapists help adults who find speaking difficult, with exercises or alternative methods such as symbols, sign language or speech-generating devices. They also assess swallowing, because difficulty can create a risk of choking or chest infection and long-lasting problems can cause malnutrition. Treatments include techniques and exercises, dietary changes and in more severe cases a feeding tube.

Occupational therapists advise adults on independent living, covering housing, getting a job, benefits and technology that makes tasks easier. NHS inform notes that therapists can show how to break activities into smaller movements to build confidence.

The NHS says that the daily challenges of living with cerebral palsy can be difficult to cope with and may lead to clinical depression in some people. NHS inform points to NHS mental health services for adults. Fatigue and sleep problems are common and are worth raising at reviews because they respond to targeted management.

Scope is described by the NHS as the main UK charity for people with cerebral palsy and their families, offering an online community and helplines. Care teams can also give details of local support groups.

The NHS says that children and adults with cerebral palsy are cared for by a team that works with them on a care and support plan, which is continually reassessed as needs change. In practice, the move from paediatric to adult services is a point at which follow-up can lapse, so young adults and families benefit from asking who their adult contact will be and how to request a review for new pain, falls, loss of function or changes in mood.