Everything you need to know about living well with cerebral palsy

It is important to remember that cerebral palsy is as individual as the child themselves. Your child will grow and develop as they get older and therefore their needs will change as they grow - just as with any child.

This cerebral palsy guide will look at some of the main questions, concerns and issues surrounding having a child with cerebral palsy: what is cerebral palsy, what causes cerebral palsy, what are the main types of cerebral palsy, what are the symptoms of cerebral palsy and aids for cerebral palsy to make daily tasks simpler for carers or those living with the condition.

We have also included links throughout this cerebral palsy guide, plus a list of useful agencies at the end, offering additional information and support around cerebral palsy concerns. Complete Care Shop is dedicated to ‘Putting People First’ and empowering those living with conditions such as cerebral palsy. We hope you find this cerebral palsy information helpful if you’re living with, or know of someone living with cerebral palsy.

People living with cerebral palsy

Here are some facts and figures from the UK cerebral palsy organisation:

• Two-thirds of children with cerebral palsy are able to walk
• Three-quarters of children with the condition are able to do everyday tasks – like feeding themselves
• Around one in ten children with cerebral palsy have a visual impairment
• Only one in fifty children with cerebral palsy have a hearing impairment
• Adults living with cerebral palsy can also be prone to develop other conditions as they get older such as osteoarthritis
• There are many people with cerebral palsy in the UK living a full and productive life

What is cerebral palsy?

Cerebral palsy is a condition which affects muscle control and coordination. It is usually diagnosed after damage is caused to the developing brain of a child. It can occur in the later stages of pregnancy before the baby is born, during birth and up until the child is about two years old. If the brain is damaged in the area which controls body movement, coordination and muscle tone, then a range of typical cerebral palsy symptoms may develop.

The condition is not progressive, meaning it does not worsen over time, but the symptoms may change as a person grows and develops.

What causes cerebral palsy?

There are three types of damage which can occur to the baby’s brain, resulting in cerebral palsy:

• Abnormal brain development during pregnancy
• Serious infections during the early stage of pregnancy
• Lack of oxygen to the baby’s brain during birth or within the first 3 years of a child’s life - there are a lot of other possible reasons for oxygen deprivation

However, it may be that no one cause can be identified in an individual.

For cerebral palsy, there is no definitive test to either confirm or rule out the condition. Typically a firm diagnosis can be made within the first two years, however, in some cases, a diagnosis can be made shortly after birth.

Did you know?

Cerebral palsy is the most common motor disability in children - you are not alone!

What are the main types of cerebral palsy?

Some types of cerebral palsy are more common than others and experiences of the condition will differ depending on the type. There are three main types of cerebral palsy, these are: 

• Spastic
• Athetoid
• Ataxic

Each one affects the function of the body’s muscles in different ways and will likely have an impact on the way someone walks or speaks. Cerebral palsy is usually classed according to the type of body movement presented by a child, whilst also taking into account any postural issues.

Spastic cerebral palsy

This is the most common form of the condition and affects around 75–88% of those living with cerebral palsy. Here muscle tone is very tight, causing people to have painful muscle spasms. This version can be divided into three types, depending on how the body is affected:

• Hemiplegia: both the arm and leg on one side of the body are affected;
• Diplegia: both legs are affected, but the arms may not be or are only mildly involved;
• Quadriplegia: both arms and both legs are affected, to a greater or lesser extent.

Athetoid cerebral palsy

You may also hear this type of cerebral palsy called dyskinetic or dystonic. It affects around 15% of those living with cerebral palsy. This causes uncontrolled and involuntary movements and peoples’ muscle tone will vary from spastic to very low tone (loose). Speech might be more difficult as it can be harder to control the tongue and vocal cords.

Ataxic cerebral palsy

This is the least common type of cerebral palsy, affecting approximately 5% of all people with the condition. This can affect the whole body and make it more difficult to control balance when walking, causing those with the condition to be unsteady and shaky.

Did you know?

It is estimated that 1 in 400 babies born in the UK have some form of Cerebral Palsy.

What are the symptoms of Cerebral Palsy?

Cerebral palsy is as individual as the people themselves. The symptoms of cerebral palsy vary with the type and the person but are not necessarily all present, and the severity of each may vary. Where some may have difficulty with balance, others may experience uncontrolled movements caused by loose or tight muscle tone. Many people with cerebral palsy can also live with other conditions, such as epilepsy or learning difficulties, which require additional care and attention.

What are the symptoms of Spastic Cerebral Palsy?

• Very tight tone which can make movement of arms and legs more difficult
• Stiff and jerky movements
• Muscles shorten with age

What are the symptoms of Athetoid Cerebral Palsy?

• Uncontrolled movements caused by muscle tone which varies from tight to very loose
• Uncontrolled twitching or writhing

What are the symptoms of Ataxic Cerebral Palsy?

Symptoms are generally less obvious than for the other two types.

• Difficulty with balance
• Problems with spatial awareness
• Unsteady movements

It is possible for people to be affected by more than one type of cerebral palsy, so the symptoms may not be conclusive in identifying a specific type.

There are some associated conditions which may affect people with cerebral palsy too:

• Learning disabilities (although children with cerebral palsy have the same range of intelligence as other children)
• Speech difficulties
• Epilepsy can affect up to a third of children with cerebral palsy
• Problems with toileting

Did you know?

There are 1800 babies and children who are diagnosed with cerebral palsy each year.

Daily living with cerebral palsy

Cerebral palsy isn’t a progressive condition and a person’s life expectancy isn’t usually affected.

However, as with anyone, the effects of cerebral palsy can worsen as a person ages. This can mean that people experience difficulties carrying out important daily tasks.

Some of these common effects which can affect older people with cerebral palsy include:

• Increased pain from joints causing inflexibility
• Shortening of muscles (contractures) leading to fixed limbs
• Breakdown of the skin
• Post-impairment syndrome – damage and weakness to muscles and joints, often caused by poor posture or strain from consistent use of walking equipment
• Intestinal problems due to pressure on internal organs

How to manage pain from cerebral palsy

Cerebral palsy in itself isn’t painful, but the impairments and bodily changes that can occur during the life of those living with the condition can induce some pain.

Treatment for cerebral palsy-related pain includes:

• Anticholinergic medication to treat uncontrolled movements and spasms
• Muscle relaxants to relieve stiff or over-contracted muscles
• Painkillers
• Physiotherapy to stretch and exercise muscles and joints
• Good seating and sleep positions to improve posture and maintain flexibility
• Surgery is often recommended to lengthen leg muscles and tendons to make walking easier and less painful

Cerebral palsy products

At Complete Care Shop, we offer a wide variety of equipment that can help those who are older, or have a health condition, such as cerebral palsy, live more independently. Below you’ll find some of our most popular products which can help relieve some of the symptoms of cerebral palsy and enable those living with the condition to do more things for themselves – whether at home or when out and about.

Impact on daily living

Many of the challenges cerebral palsy presents can be made easier with the use of adaptive equipment and living aids – some of which can also allow people with the condition to be more independent.

Out and about

A wheelchair or a wheeled supportive walking frame can help people move around more safely and can also help with maintaining a good posture. It is important to get professional advice before choosing either a frame or a wheelchair.

Bathing

Bath hoists and bath lifts can be very useful to make use of an ordinary bath, while bath cushions can give some protection for those who have uncontrolled movements. It may be easier to have a level access / walk-in shower with a shower chair to provide support for the person and easier access for a carer.

Toileting

Raised toilet seats and toilet frames can make toileting and personal hygiene much easier. You can also get wheeled toilet chairs for use over the toilet to provide support. Many children benefit from using additional harnesses and supports fixed to the toilet. People can also be more independent and dignified if they use an automatic wash / dry toilet.

Eating, drinking and cooking

Adapted cutlery, plates and cups can help during mealtimes and there are many holding, cutting and pouring aids for the kitchen to help when cooking.

Play and exercise

There are a range of adaptive toys and games for children and adults with cerebral palsy. These can enhance an individual's quality of life by making exercise more fun and less stressful.

Diet and exercise for cerebral palsy information

It’s quite common for those living with cerebral palsy to have eating or digestive problems – as many as 93% of people may have feeding difficulties, especially if the facial muscles are affected by the condition. Cerebral palsy can also cause people issues with constipation. The advice of a qualified dietician or other appropriate healthcare professional should be sought to make sure that the person with cerebral palsy is receiving the correct amount of nutrition and suitable foods and that food is prepared and presented in the best way to suit their needs.

This may include:

• Pureeing or chopping food and adding liquid to make it easier to swallow
• Looking at feeding methods. Wherever possible, those living with the condition are encouraged to feed themselves and can be given training to use adaptive equipment. However, if this isn’t possible, then carers can be taught how to allow enough time for swallowing and, if necessary, how to give food through a feeding tube
• Meal timings may need adjustment to allow for slower digestion rates. Smaller, more frequent meals may be helpful and may need to be structured around medication times, as some treatments are best given with food to avoid stomach upsets

Exercise is important to ensure muscles and joints function with as much range of movement as possible. Physiotherapists can provide daily exercises, according to specific issues. Adaptive toys and games for children can be fun and won’t make them feel like they’re following an exercise routine. Cerebral Palsy Sport runs a very active group and Facebook page that may be a useful resource.

As everyone living with cerebral palsy has different issues and needs, it is impossible to generalise on diet or suitable cerebral palsy exercises and the advice of your health care professional should always be sought.

Support

When your child first receives a cerebral palsy diagnosis, both you and they can feel very isolated and alone, which is perfectly natural. It’s important to accept the diagnosis in your own time and come to terms with what this means to you both individually and as a family.

There are lots of useful resources available to help plan for the future and you must remember there are many avenues for you to travel in order to find the right support for your child and family.

Cerebral palsy support and help

If you need help or support with cerebral palsy, you have the option to contact one of our OT’s for expert advice. If you need any further assistance there are a variety of options available. The best point of call is to contact your GP, but if you’re looking for some quick tips and information:

• The NHS UK website has a good video which explains some of the cerebral palsy causes, symptoms and treatments for children
• The SCOPE website has a great deal of useful information about all areas of cerebral palsy

Communities

There are many online forums and support groups where you can ask questions and talk to other people or families living with cerebral palsy. These are great resources to help you if you’re feeling alone.

SCOPE has a very active online community.

There are many Facebook groups for people with cerebral palsy and their carers. These include regional UK groups and international ones. A simple search for Cerebral Palsy will bring up dozens, from which you can find the best for you. 

The Contact a Family organisation has a forum for families with disabled children.

Cerebral palsy guide resources

• Scope - ensures disabled people have the same opportunities as everyone else
• Contact a Family - a charity for families with disabled children
• Cerebral Palsy Sport - helps children and young people with cerebral palsy enjoy playing sports
• Cerebral Palsy Sport Facebook - Facebook page supporting the Nottingham-based charity
• PACE - a charity that transforms the lives of children and young people with motor disorders
• NHS Choices - helps to explain health conditions in more detail
• EmployAbility - opportunities for disabled and dyslexic students & graduates

Glossary

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology.

Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of cerebral palsy as straightforward as possible.

Dyskinetic/Dystonic

Other terms for Athetoid cerebral palsy

Scoliosis

Sideways curvature of the spine

Anticholinergic

Medication to control spasms and involuntary movements

Cerebral palsy guide

We hope you found this cerebral palsy guide useful and that it has provided you with the cerebral palsy information you were looking for. If you have any further questions or queries you can head to our handy help and advice section for more guidance. 

If you wish to speak to us about any of our products, do not hesitate to contact us.