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 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. Healthcare Pro 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.
Here are some facts and figures from the UK Cerebral Palsy Organisation.
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.
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:
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.
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.
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:
You may also hear this type of cerebral palsy called dyskinetic or dystonic. It occurs in about 15% 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.
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.
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:
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:
Treatment for cerebral palsy related pain includes:
At Healthcare Pro, 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.
PLEASE NOTE: our Product Advice Team can only give advice about equipment and products which may help you to live more independently. They cannot give any advice on medications or treatments for symptoms of this condition.
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.
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.
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.
This may include:
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.
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.
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
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
The Contact a Family organisation has a forum for families with disabled children
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 sport
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
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.
Other terms for Athetoid cerebral palsy
Sideways curvature of the spine
Medication to control spasms and involuntary movements