Ageing with cerebral palsy (Post-Impairment Syndrome)

Cerebral palsy is a non-progressive condition caused by acquired brain damage to the foetal or infant brain which affects the functioning of the body. Being a non-progressive disorder means the brain injury doesn’t worsen over a person’s lifetime, however with ageing the condition can cause new challenges and issues. Due to advances in treatment and management, life expectancy for individuals with CP is nearly the same as the general population so post-impairment syndrome is important to be aware of.

What is Post-Impairment Syndrome?

We know that people with CP use more energy than people without CP to do everyday tasks. This energy use, along with increased stresses and strains on the body due to abnormal movement patterns and altered muscle and bone development, can cause so called ‘premature ageing’. This can present as a collection of symptoms and health problems that may result in discomfort, pain and deterioration in mobility. Symptoms vary by individual, but often include;

Fatigue

As people with cerebral palsy use three to five times more energy to move and do everyday tasks than people without the condition, over time this leads to generalised fatigue and exhaustion. For many people with post-impairment syndrome, fatigue is the biggest hurdle. There are different strategies that can help which your Occupational Therapist can work through with you.

Arthritis, pain and overuse syndromes

Cerebral palsy can impact on the development and function of muscles, bones and joints which alters the forces and stresses put on the spine and joints. These changes can lead to early onset osteoarthritis or scoliosis with associated pain. In addition, abnormal movement patterns or use of mobility aids can result in repetitive use injuries or pain from sore or imbalanced muscles.

For some people, pain can be managed with preventative measures. This includes ensuring you are moving in the best way, stretching and strengthening exercises or the use of insoles or other orthotics to improve posture and walking. Medication may also help but it is important to look at all the physical measures first with your physiotherapist.

Weakness or deterioration in walking

When nerves bring abnormal signals to muscles, they can become either too stiff or too floppy. Either way, this can cause muscle weakness that worsens over time, making movements even more challenging. As we all age, we start to lose muscle strength but for people with CP this change is more obvious; for some individuals, premature ageing may require the use of mobility aids, such as wheelchairs or crutches. It is therefore crucial to try and preserve strength by exercising regularly. Your physiotherapist will be able to advise exercises right for you.

Bladder and bowel dysfunction

A variety of bladder problems can occur, including difficulty emptying the bladder completely, infections or incontinence. Similarly constipation can be common. These problems occur due to a combination of factors including abnormal development, ageing, immobility and importantly side effects of medications. Always speak to a nurse or doctor who will be able to advise further.

Depression

Although a change in mood is not always included as a symptom of post-impairment syndrome, it is clear that adults with cerebral palsy may be susceptible to depression or anxiety, this may be due to the fear of the future and growing old but also reflects years of struggling with the condition and its resultant painful symptoms or difficulties with mobility. Talking therapies or seeing a psychologist can be really helpful.

Preventing Post-impairment Syndrome

Being aware of the symptoms that can occur in later years is really important and is the first step to minimising their impact and ensuring that quality of life can be brought to its full potential whilst living with cerebral palsy.

Lifestyle changes can be beneficial, including good sleep habits, eating a healthy diet, maintaining a healthy weight and exercising regularly.

People living with CP can greatly benefit from charities/support groups enabling discussion with others who may be experiencing similar challenges.

Charities and Contact details

Scope - https://www.scope.org.uk

Adult CP Hub - www.adultcphub.org ; they also have a facebook and a twitter account.

CP Sport - http://www.cpsport.org

Direct line: 02034483439

Email: uclh.cpteam@nhs.net

Adult CPhub to the Adult Cerebral Palsy Movement:UP Movement. Home - UP (upmovement.org.uk)

Website: https://www.uclh.nhs.uk/our-services/find-service/neurology-and-neurosurgery/adult-cerebral-palsy