Cerebral Palsy Advice for Life and Work

Cerebral Palsy is the most common physical disability present from birth or early childhood, affecting about 17 million people globally.  It is not a progressive condition.  It does not get worse over time, although how it impacts life may change for someone with the condition.

In the UK, it currently affects about 1 in 400 births and is an umbrella term for a range of movement, posture and balance issues resulting from brain damage. The most common type of damage affecting people, according to CP Scotland, is about 75 percent of the condition is spasticity.  This causes tight tense stiff muscle tone and contractions due to damage to the Motor Cortex of the brain. Another type of Cerebral Palsy is Ataxic found in 6% of cases, causing shaking, leading to poor balance and falls.  This is due to damage to the Cerebellum and, finally, Dyskinetic, found in 6% of cases, causing involuntary movements due to damage to the Basal Ganglia.

Often, other areas of the brain are also affected and other conditions therefore also exist.  Due to Cerebral Palsy, 1 in 3 are unable to walk, 2 out of 3 experience pain, 1 in 5 has a sleep disorder, 1 in 4 has a behavioural condition, 1 in 4 has severe learning difficulties, 1 in 4 has Epilepsy.

There is a Gross Motor Function Classification Scheme with five levels for measuring impact on gross motor skills, looking at impact on movement and tasks, like sitting and walking developed by Can Child Canada. 

There are different terms for Cerebral Palsy, depending on the area of the body affected.  Diplegia is a type of Cerebral Palsy affecting both limbs, such as both legs, it occurs in about 38% of cases.  Hemiplegia affects just one side of the body and is found in about 39% of cases.  The most severe type is Quadriplegia affecting all four limbs, so arms and legs equally.

Risk factors for Cerebral Palsy include premature birth, multiple births, lack of oxygen to the brain, having a very low birth weight, unusual brain development, or having an infection in early pregnancy.  Cerebral Palsy is more common in first born children and those from large families with many other siblings where the individual is the 5th born or more.

So often, the attention for understanding Cerebral Palsy is on children and understanding the impact on adults is not really as well covered.  Useful treatments for adults (and children) include physiotherapy exercises to stretch muscles, work on a range of movements, balance and posture.  Hydrotherapyis excellent, involving high temps of water to relax muscles while the person does exercises.   Occupational therapy to develop life skills strategies, modify equipment, adapt how things are done and find practical solutions for independence.  Fictional Electrical Stimulation causing involuntary moment or weak or paralysed muscles to build up muscles can be useful as a form of FES cycling or to cause a person to pick up their foot to stop foot drop, helping a person to walk without tripping and get a more natural gait (walking style).  FES can be combined with treatments like Baclofen Medication or Botox, so the feet are not so much on tip toe.  Baclofen is a muscle relaxant that can be given via pills to help relax muscles, treat spasticity and reduce pain.  But, it has often side effects and can mean the person is using very weak muscles, having to re-learn how to walk.  Baclofen Therapy via a pump can be given at a high dose direct into the spine and is used in severe cases of Cerebral Palsy to help with range of motion, functioning and helping someone gain more independence, like being more able to manage personal care.  A pump is only offered when Baclofen oral medication has been ineffective or very badly tolerated.  Botox can be given via injection to relax muscles.

Another option is Selective Dorsal Rhizotomy Surgery more commonly done on children with Diplegia Cerebral Palsy and rarely available on the NHS it has been done for example in American on young adults. The operation is intended to reduce spasticity (tight and stiff muscle tone) in the lower limbs/legs by dividing some of the lumbar sensory nerve roots on the spine, thus breaking down the reflex arcs that cause increased muscle tone. The operation therefore improves communication between the spine and the muscle. This improves movement, stiffness, spasms and reduces pain but involves relearning how to walk and considerable physiotherapy.    

Sometimes especially in children any young people orthopaedic surgery is used such as to stretch the muscles in the case of spasticity this can help increase mobility, range of motion and to manage systems like pain and help against contractions. Sometimes as people get older, they need surgery like on their knees.  Some organs like the heart and lungs have in some people with the condition to work harder and so can sometimes age sooner. There can be extra pressure and pain causing problems like with knees, hips. If you have CP you use much more energy to do everyday tasks like walking causing problems like with fatigue. You are at higher risk of conditions like arthritis due to the pressure you put on joints. You can cause issues due to repetitive and restrictive movement and risks this creates like from osteoarthritis and degenerative arthritis. You are more likely to develop muscle and skeletal abnormalities like from the spasticity and poor posture.  This can also cause secondary issues like with digestion.     

Sometimes people benefit from orthoticslike for their feet, callipers or as night or day splints to stretch the muscles and stop contractions. Different orthotics can help range of movement, help with balance, help with mobility, help give confidence, improve gait, reduce pain and also provide greater independence. This can also stop the need for more extreme actions like surgery.    

Some people find orthotic clothinglike body suites or shorts help with posture, balance, pain and the appearance of gait.  

Some people will find they benefit from adaptive clothing or and tools to help with everyday tasks like dressing and cooking check out this website.

Horse Riding often referred to as Hippotherapyhelps with stretching the muscles, balance and posture. Gentle yogacan provide a useful possible more enjoyable way to stretch and also manage stress helping relax. It can help with movement.   It can simple be adapted as some postures can be hard to achieve. Going to a gym can be good exercise and good socially, practicing walking on a treadmill can be good for gait.   Swimming is a good exercise for Cerebral Palsy with the water proving support and bouncy. It can reduce muscle stiffness, pain and be good exercise. Involvement in sports and staying active is good for range of movement and socially. Organisations like CP Sportprovide sporting opportunities. The organisation Parasportprovides details of local disability sport opportunities throughout the UK.

Many people can claim Disability Benefits like Personal Independence Payments PIPsee this website.

Many people benefit from using equipment like walkers and mobility scooters for getting around, check out is website for sources of support and providers. Accept the equipment and support you need so you develop workable strategies for being independent.

People often benefit from develop social support joining social and sports clubs to learn from others. Check out Disability blogs about CP from this website. There is also a Scope parenting blog and lots of resources for parenting with a physical disability under disabled parents.  

Some people benefit from using technology. Most people with CP benefit from develop their IT skills and using technology like free apps to help their learning, life skills and independence, the I pad can be an effective tool check out the technology section and information like from Call Scotland and Ability Net for the best apps and adaptions. Some people with CP benefit from adaptions to everyday technology like adapted gaming tools.  

For work have an in-work assessment and claim Access to Work funding for equipment, technology and other help like if relevant taxi’s or support workers. You may need adaptions to your job description. You may benefit from a Clear Talents Profile to show an employer for strengths, difficulties and make recommendations. You may need flexible work arrangements like reduced hours or rest breaks.  You may experience issues like with fatigue if you work full time especially. You may find tasks needing gross or fine motor movement difficult, you may find dexterity hard. You may experience difficulties like with mental health like depression. You may however find you develop good problem solving, adaptive thinking, good at finding unusual solutions and approaching tasks differently, it could make you more creative or empathetic. It could make you more determined or a better organiser.    

You may need help being independent in the home, you may need social care and Personal Assistance qualify for Direct Payments to pay for this support. You may need to make modifications at home. You may need at times a Disabled Facilities Grant to pay for small adaptions. You may need to work with an OT to make adaptions and recommendations to be independent.  

You may need to apply for Disabled Students Allowance to have support like equipment and Support workers at university and adaptions and accommodations for exams.   

When it comes to learning to drive remember to tell the DVSA that you have CP and consider what is best for you. Maybe it is easier to learn in an automatic, maybe you would feel happier with a driving instructor experienced with learners who have disabilities, maybe you should explore adaptions like controls. If you get higher rate PIP for Mobility maybe you want to get a car and or a scooter from the charity Motability. 

Cerebral Palsy links and similar conditions 

Cerebral Palsy Organisation UK.  https://www.cerebralpalsy.org.uk/

Scope UK Cerebral Palsy Charity.  http://www.scope.org.uk/

NICE Guidelines for Cerebral Palsy in adults this is the guidelines your GP or consultant follow when looking at your treatment options.  https://www.nice.org.uk/guidance/ng119

Scope Botox for Cerebral Palsy to reduce muscle tightness.  https://www.scope.org.uk/advice-and-support/botox/

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

CP Teen UK.  http://www.cpteensuk.org/disability-sport

Hemihelp Charity.  http://www.hemihelp.org.uk/hemiplegia/what_is_hemiplegia/

Ottobock is the leading prosthetic company also specialist in neurological rehabilitation with Functional Electrical Stimulation devises, orthotics, wheelchairs and specialist seating.  https://www.ottobock.co.uk

The Brain Charitywork with individuals with any neurological condition which can be very wide ranging but includes Autism, Brain Injury, Stroke, cluster headaches, ADHD, Dyslexia, Cerebral Palsy and much more they offer lots of practical help like with understanding your condition, employment tips,information and advice including a large library and many resources, benefits advice, Carer support, young people services. They also have lots of emotional support services like counselling, lists of support groups, help with confidence and employability.  https://www.thebraincharity.org.uk

Cerebral Palsy Scotland have produced an annual self check.  https://cerebralpalsyscotland.org.uk/userfiles/files/Adult_Monitoring_Questionnaire%20OL%206%20feb%2018%20-%20sf%20amends.pdf 

Awkward Disability questions and family planning Cerebral Palsy Foundation 

When you have any disability, it can be hard to get all the answers to questions you may have but you need to plan for future in this video explains about how most people with Cerebral Palsy can have their own children but that attitudes and assumptions can cause obstacles and problems growing up.  If this video interests you, also check out the parenting section of this site. 

TED TALK.  I got 99 problems and Cerebral Palsy is just one - Maysoon Zayid

NHS Pat's story of adult independent life with Cerebral Palsy. 

A look at living independently and being independent, such as water skiing and driving.  Looking at the role of OT and family support to believe in herself and achieve.  Find strategies for yourself that work for you.