Commonly Asked Questions
The following are among a few of the most common questions we are asked about Cerebral Palsy and how it relates to adults.
What is Cerebral Palsy?
Cerebral Palsy is a neurodevelopmental disability, that means it affects the development of the brain. It is commonly thought that Cerebral Palsy occurs as a result of an injury to the brain, before, during or after birth.
What are the different types of Cerebral Palsy?
All people with cerebral palsy experience disordered movement. However, the type of movement disorder and the degree of functional disability experienced varies greatly between people.
The type of movement disorder experienced is generally categorized as spasticity, dyskinesia or ataxia. Many people with cerebral palsy also experience more than one types of movement disorder and are sometimes said to have “mixed” cerebral palsy.
Spastic Cerebral Palsy
(affects muscle stiffness or weakness)
Most people with cerebral palsy experience spasticity, that is they have stiff, tight muscles. If one side of the body is affected it is said to be unilateral spastic cerebral palsy. If both sides are affected it is called bilateral spastic cerebral palsy.
Athetoid or Dyskinetic Cerebral Palsy
(affects muscle tone, causing
People with dyskinetic cerebral palsy generally have involuntary movements, although how these present varies between people.
Ataxic Cerebral Palsy
(affects balance and coordination)
People with ataxic cerebral palsy experience loss of balance and co-ordination.
How else can Cerebral Palsy affect you?
As well as experiencing disordered movement many people with cerebral palsy will experience impaired vision (about 11% of people), impaired hearing (about 7% of people), epilepsy (about 35% of people), intellectual impairment (about 50% of people), and autism spectrum disorder (about 9% of people)
Is Cerebral Palsy a Progressive Condition?
Cerebral Palsy is not a progressive condition in that the initial neurological damage remains unchanged. However Cerebral Palsy can have a degenerative impact that necessitates on going medical treatment into adulthood to offset medical issues, such as early joint degeneration and other co-morbidities due to the long-term impact of living with a disability.
What are the common problems adults with CP experience as they age?
The degenerative impact of a lifetime living with Cerebral Palsy can cause long-term issues both mentally and physically for the individual as they age. Some of the issues that people with Cerebral Palsy report becoming more difficult as they get older include…
- Increased joint and muscle pain
- Higher levels of fatigue
- Increase in muscle weakness, spasm, tightening and shortening
- Orthopaedic issues including osteoarthritis and osteoporosis
- Degeneration in mobility
- Mental health issues
- Vascular issues
- An increased risk of falls due to worsening balance and coordination
- Dental health problems
- Long-term side effects due to medications or surgeries
Adults with Cerebral Palsy are also less likely to access mainstream screening and well-being services such as cervical screening, breast screening and general health checks. Which in turn increase their risk of unidentified health issues.
Are women with Cerebral Palsy more at risk of additional health issues?
Besides the potential risk of chronic diseases identified in both men and women with cerebral palsy, there is little research to suggest that women experience any additional health issues.
Although there is very little research looking at preventive health care such as cancer screening among people with cerebral palsy, we know that women with mobility difficulties are less likely to attend breast cancer and cervical cancer screening.
Will my mobility change as I get older?
There is some research that suggests at least a quarter of adults with cerebral palsy who walk as children will find that their walking gets worse with age. In particular, people who frequently experience pain and fatigue and people who have cerebral palsy that affects both sides of their body may find that their walking gets worse as they get older.
As people with cerebral palsy get older they are also more likely to experience musculoskeletal disorders like osteoporosis and arthritis, just like people without cerebral palsy do. However, adults with cerebral palsy may develop these conditions at a younger age than people without cerebral palsy and this may contribute to a deterioration in their ability to walk. For example, one study found that if adults with cerebral palsy develop osteoporosis they develop it on average around age 55 compared to age 69 for adults without cerebral palsy. Similarly, if adults with cerebral palsy develop arthritis, they develop it on average around 53 years of age, compared to 59 years of age for adults without cerebral palsy.
Are adults with CP more likely to suffer from other chronic conditions?
Adults with cerebral palsy may be more likely to experience a number of other chronic conditions than adults without cerebral palsy. In particular, they may be more likely to develop cardiovascular diseases, such as high blood pressure, a stroke or heart failure, and respiratory disease such as asthma and chronic obstructive pulmonary disease (COPD).
Although we know the risk of developing chronic conditions is higher in adults with cerebral palsy compared to adults without cerebral palsy, we know less about how many adults with cerebral palsy actually experience these conditions.
What is the Life Expectancy for somebody living with Cerebral Palsy?
Research indicates that most will have a similar life expectancy to non-disabled people
Over the past three decades the number of children with cerebral palsy who live to reach adulthood has improved year on year. The vast majority of children with cerebral palsy will reach adulthood.
Life expectancy varies between people with cerebral palsy depending on the severity of their functional disability, difficulties feeding, and intellectual impairment.
What is Post Impairment Syndrome?
Post Impairment Syndrome is a term used to describe some of the symptoms that occur in adulthood. It comprises a combination of several or all of the following factors:
- Fatigue: Higher levels of fatigue from young age in Cerebral Palsy population
- Pain: Back, hip, lower limbs and shoulders are most common areas of pain
- Bone deformities: Abnormal strain and growth under abnormal loading Over use syndrome or repetitive strain injuries
- Degenerative arthritis: Hips are most common area of decline; surgical interventions include head / neck resections, osteotomy and Total Hip Replacement
Muskulo-skeletal abnormalities which do not result in discomfort during childhood start to cause pain in adulthood; reduce muscle strength and movement patterns and alterations of movement patterns results in the risk of overuse syndrome
Which professionals should make up the team to support an adult with CP?
The NICE Guidelines recognize that Cerebral Palsy is a condition that requires support from all or some of the following services
- advocacy support
- learning disability services
- mental health services
- orthopaedic surgery (and post-surgery rehabilitation)
- rehabilitation engineering services
- rehabilitation medicine or specialist neurology services
- secondary care expertise for managing comorbidities (e.g. respiratory, gastrointestinal and urology services)
- social care
- specialist therapy services (e.g. physiotherapy and occupational therapy)
- wheelchair services
- Orthotist and gait analysis
- Women’s Health
How should Adults with Cerebral Palsy be managed?
The NICE Guidelines identify the following factors to be important in the care and management of adults with Cerebral Palsy:
- The needs of adults with cerebral palsy may change over time and services should be sufficiently flexible to manage these challenges.
- Regular reviews are important to check for any new problems and ensure that people’s needs continue to be met.
- Reviews should be considered, tailored to the person’s needs. The frequency of review will depend on a person’s needs and wishes.
- Rapid access to specialist multidisciplinary teams is particularly important when the person with Cerebral Palsy experiences a change or deterioration in their functional abilities.
Do other people with CP suffer from mental health issues or is it just me?
You are not alone. A recent study was led by researchers from RCSI (Royal College of Surgeons in Ireland) and the University of Surrey who found that adults with Cerebral Palsy are 28% more at risk of depression and 40% more at risk of anxiety than adults without cerebral palsy.