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Cerebral Palsy

Everything you need to know about living well with Cerebral Palsy

  • Introduction
  • Types
  • Symptoms
  • Daily Living
  • Support
  • Glossary

Introduction

If you have a child who has been recently diagnosed with cerebral palsy you may be feeling apprehensive about what the future holds for you and your family.

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 have changing needs as they grow – just as any child does.

This guide aims to look at some of the main questions, concerns and issues surrounding having a child with cerebral palsy: what it is, why it happens, what the symptoms of cerebral palsy are, how to help care for a family member 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 guide, plus a list of useful agencies at the end, which offer additional information and support around the issues surrounding cerebral palsy. NRS Healthcare is dedicated to ‘Putting People First’ and we hope you find this guide useful if you’re living with, or know of someone living with, cerebral palsy.

Introduction

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 feed themselves
    • Around one in ten children with cerebral palsy has a visual impairment
    • Only one in fifty children with cerebral palsy has 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, co-ordination and muscle tone, then a range of typical cerebral palsy symptoms may develop.

What causes Cerebral Palsy?

It may be that no one cause can be found in an individual, but 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
There is no definitive test that either rules out or confirms cerebral palsy. In severe cases, a firm cerebral palsy diagnosis can be made soon after birth, but within the first two years is more usual. For those with milder cerebral palsy symptoms, a diagnosis may not be possible until the child’s brain is fully developed at around three to five years old. There is no cure for cerebral palsy, but people with the condition are generally healthy and there is a wide range of cerebral palsy treatments and therapies which can help people become more independent and live well.
Did you know... "Cerebral palsy is the most common motor disability in children - you are not alone!"

The Three Main Types of Cerebral Palsy

Some types of cerebral palsy are more common than others and experiences of the condition will differ according to the type.

Spastic, Athetoid and Ataxic are the three types of cerebral palsy a child can be diagnosed with.


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.

Introduction

Spastic cerebral palsy

This is the most common form of the condition and affects around 75–88 percent 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
    – this means that both the arm and leg on one side of the body is affected;
Diplegia
    – this means that both legs are affected, but the arms may not be or are only mildly involved;
Quadraplegia
    – means that 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 occurs in about 15 percent of cerebral palsy cases. 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 percent 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 than 1 in 400 babies born in UK have some form of Cerebral Palsy."

Symptoms of Cerebral Palsy

Symptoms are vary greatly according to type and, of course, according to the person who is living with the 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.

Introduction

Spastic cerebral palsy

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

Athetoid cerebral palsy

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

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 all of us, 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
Introduction

Managing Pain

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:

    • 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

Products

At NRS Healthcare, we offer a huge range of equipment that can help those who are older, or have a health condition, 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.

    Getting 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 or bath lifts can be very useful to make use of an ordinary bath and 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
    Play and exercise – there are many adaptive toys and games for children and older people with cerebral palsy. These can help to make exercise more fun and less of a routine

Diet and exercise for cerebral palsy

It’s quite common for those living with cerebral palsy to have eating or digestive problems – as many as 93 percent of people may have feeding difficulties, especially if the face muscles are affected by the condition. Cerebral palsy can also cause people problems 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, suitable foods and that food is prepared and presented in the best way.

carer image

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 give people a number of exercises to do each day, according to their 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.


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 be sought.

Did you know... "It is estimated that 111,000 people in the UK currently have cerebral palsy."

Support for Cerebral Palsy

Remember - you are not alone!

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.

Introduction

Cerebral palsy support and help

    If you need help or support with cerebral palsy, you have the option to live chat with one of the OT’s at NRS Healthcare on our website. If you need any further assistance there 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

Helping others with cerebral palsy

“Putting people first” is at the core of what we do at NRS Healthcare. Our values are centred on providing dignity and respect for all. We continuously strive to be the first choice provider in assistive technology products and services.

Communities

    There are many online forums and support groups where you can ask questions, talk to people in a similar situation or just feel that you’re not 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 search for Cerebral Palsy will bring up dozens

Resources

    Scope - ensures disabled people have the same opportunities as everyone else
    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
Did you know..."Cerebral palsy has been well documented throughout history and does not always having a single, identifiable cause."

Glossary

Unsure what something means? Checkout our Glossary section below.

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.

Introduction

Some words associated with cerebral palsy

Dyskinetic/Dystonic

    – other terms for Athetoid cerebral palsy

Scoliosis

    – sideways curvature of the spine

Anticholinergic

    – medication to control spasms and involuntary movements

Did you know... "Cerebral Palsy affects more boys than girls - 135 boys to 100 girls."
Last updated on 05/02/2019

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