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Guide to Cerebral Palsy

» INTRODUCTION TO CEREBRAL PALSY (CP)

» WHAT IS CEREBRAL PALSY?

» WHAT CAUSES CEREBRAL PALSY?

» TYPES OF CP

» TREATMENT AND MANAGEMENT OF CP

» EDUCATIONAL SUPPORTS

» INDEPENDENT LIVING

» AGING AND CP

» MAINTAINING PHYSICAL & MENTAL HEALTH


INTRODUCTION TO CEREBRAL PALSY (CP)

  • CP describes many different types of disability, ranging from mild to severe, with different causes, affecting individuals in many ways.
  • In Canada, people with disabilities, have access to a range of support and therapy services, equipment, medical intervention, and educational and employment opportunities in the world. Having CP should be no barrier to leading an enjoyable and productive life but, realistically, it does present some additional challenges. Being well informed about the options and opportunities available is a first step in coping with these challenges.

    The information on this website is designed to be a general introduction for anyone interested in Cerebral Palsy, such as:
    • parents whose child has been diagnosed as having CP, or whose suspected of having CP
    • people with CP wanting basic information, or wishing to provide information to friends and assistants
    • education, social service and health professionals
    • friends, relatives and colleagues of people with CP

    Provincial Cerebral Palsy Associations will be pleased to supply further information on areas of particular interest to you.


WHAT IS CEREBRAL PALSY?

  • CP is a term used to describe a group of disorders affecting body movement and muscle co-ordination.
  • The medical definition of CP is “a non-progressive but not unchanging disorder of movement and or posture, due to an insult to or anomaly of the developing brain."

    CEREBRAL = OF THE BRAIN
    PALSY = LACK OF MUSCLE CONTROL
     
  • Development of the brain starts in early pregnancy and continues until about the age three. Damage to the brain during this time may result in CP. This damage interferes with messages from the brain to the body, and from the body to the brain.
  • CP, at its mildest, may result in a slight awkwardness of movement or hand control. At its most severe, CP may result in virtually no muscle control, profoundly affecting movement and speech.

    Depending on which areas of the brain have been damaged, one or more of the following may occur:
    • Muscle tightness or spasm
    • Involuntary movement
    • Difficulty with gross motor skills such as walking and running
    • Difficulty with fine motor skills such as writing and speaking
    • Abnormal perception and sensation

    These effects may cause associated problems such as difficulties in feeding, poor bladder and bowel control, breathing problems, pressure sores.

    The brain damage which caused CP may also lead to other conditions such as:

    • Seizures
    • Learning Disabilities
    • Hearing Impairment
    • Vision Problems

    Important notes to remember about CP:

    • CP is not contagious
    • CP is not hereditary
    • CP is not life-threatening
    • Limbs affected by CP are not paralysed and can feel pain, heat, cold and pressure
    • Just because someone with CP may not be able to speak or speak clearly does not mean that they have nothing to say
    • The degree of physical disability experienced by a person with CP is not an indication of their level of intelligence
    • People with CP have a normal life-expectancy
    • Damage to the brain is a one-time event so the condition will not get worse although the effects of CP may change overtime
    • Some individuals may improve overtime and some may get worse as tight muscles can cause problems in the hips and spines of growing children and may require orthopedic surgery; the aging process can be harder on bodies with abnormal posture or which have had little exercise.
    • It is difficult to estimate exactly how many people have CP. Many people with mile CP are never diagnosed, while others may have multiple disabilities which overshadow their CP.
    • It is estimated that one out of every 500 babies, and up to one in three premature babies are affected to some extent. There are over 50,000 Canadians with CP.

WHAT CAUSES CEREBRAL PALSY?


Any damage to the developing brain, whether caused by genetic or developmental disorders, injury or disease may produce CP.

During Pregnancy:

Anything, which tends to produce a low birth weight baby, will increase the likelihood of CP.

Factors during pregnancy which may cause CP include:

  • Multiple births (twins or triplets)
  • A damaged placenta which may interfere with fetal growth
  • Infections
  • Poor nutrition
  • Exposure to toxic substances, including nicotine and alcohol
  • Maternal diabetes, hyperthyroidism or high blood pressure
  • Premature dilation of the cervix leading to premature delivery
  • Biochemical genetic disorder
  • Chance malformations of the developing

During labour:

  • Premature delivery
  • Abnormal positioning of the baby (such as breech or transverse lie) which makes delivery difficult
  • Rupture of the amniotic membranes leading to fetal infection

In early childhood:
CP can occur if a young child suffers brain damage due to:

  • Infections such as meningitis
  • Brain hemorrhages
  • Head injury following falls, car accidents or abuse
  • A lack of oxygen (asphyxia) due to accidents such as drowning
  • Seizures

    Not many years ago, CP was usually described as being caused by "a lack of oxygen at birth". Researchers have come to realise that the causes are far more complex. In many cases, a difficult labour may be a symptom rather than a casue of CP. Many people with CP are born prematurely, but other families sail through a straightforward pregnancy and deliver to be hit by CP "out of the blue".

    Every person with CP asks "why did this happen to me?" and every parent of a child with CP asks "did I do anything wrong?". In most instances, these questions will never be answered to your satisfaction. As one mother said, "When I stopped saying 'why me?' I was ready to accept my son's CP and look to the future."

 

 

Diagnosis of CP

  • CAT (Computerized Axial Tomography) and MRI (Magnetic Resonance Imaging) can identify lesions in the brain. This technology enables some children who are considered at risk of having CP to be diagnosed very early
  • For the majority of people with CP it will be months or sometimes years before a diagnosis is confirmed
  • A child with CP will probably be delayed in reaching their ”milestones” such as rolling over, sitting and standing
  • A baby may feel unusually stiff or floppy
  • A diagnosis of CP is unlikely to be given until the child’s progress is observed over a period of time and other conditions are ruled out

TYPES OF CP

  • With so many different causes of CP, it is no surprise that it takes many forms. Every person with CP is a unique individual, but is likely to be classified as having a particular type of CP.
  • Classification can be according to the type of movement disorder and/ or by the number of limbs affected

    Classification by Number of Limbs Involved

Quadriplegia - All four limbs are involved

Diplegia - All four limbs are involved. Both legs are more severely affected than the arms

Hemiplegia - One side of the body is affected. The arm is usually more involved than the leg.

Triplegia - Three limbs are involved, usually both arms and a leg.

Monoplegia - Only one limb is affected, usually an arm.


    Classification by Movement Disorder
    The location of the brain injury will determine how movement is affected.

    Spastic CP

    Spastic CP is the most common type and is caused by damage to the motor cortex. Spastic muscles are tight and stiff, which limit movement. Normal muscles work in pairs, when one group contracts, the other group relaxes to allow free movement in the desired direction. Spastic muscles become active together and block effective movement. This muscular tug-of-war is called co-contraction.
    Spasticity may be very mild and affect only a few movements, or very severe and affect the whole body. The amount of spasticity usually changes over time.

    Choreo-Athetoid CP

    Choreo-Athetoid CP results from damage to the basal ganglia or cerebellum and leads to difficulty in controlling and co-ordinating movement. Children may have involuntary movements (which frequently cease while they sleep), or have difficulty with skills that require coordinated movements such as speech or reaching and grasping objects smoothly. Some terms commonly used to describe these involuntary movements include:

    Athetosis – slow, writhing movements, particularly in the hands and face

    Ataxia – unsteady walking and balance problems, Ataxia results from damage to the cerebellum, the brain’s major center for balance

    Chorea – jerky movements of the head, arms or legs

    Dystonia – twisting movements and postures of the trunk or limbs

Mixed-type CP

When areas of the brain affecting both muscle tone and voluntary movement are affected, a diagnosis of Mixed-Type CP may be given. Usually the spasticity is more obvious at first, with involuntary movement increasing as the child develops.

The classifications of movement disorder and number of limbs involved are usually combined (e.g. spastic diplegia). These technical words can be useful in describing the type and extent of CP, but they are only labels. A label does not describe an individual.


TREATMENT AND MANAGEMENT OF CP


CP is not considered to be a curable condition and the word “management” is used more often than “treatment”. However, there is much that can be done to lessen the effects of CP and to help people with CP to lead independent lives.

If you have a child with CP it is easy to be overshelmed by the number of professionals involved with your child and the different management and therapy options. Not all interventions are appropriate for each individual and, as a parent, you are the person to decide what is right for you and yor child. Some parents like to involve their child in every option that may be helpful; others decide that having family time is more important than spending hours each week on therapy or the stress involved in going through another bout of surgery. Some adults with CP consdier the therapy and/or surgery they had as children was very helpful; others quit therapy in adolescence and stay as far away from doctors and therapists as they can.

Therapy

  • Physical Therapy (PT) aims to help people achieve their potential for physical independence and mobility. PT includes exercises, correct positioning and teaching alternate ways of movement such as walkers, bracing or handling a wheelchair.
  • Occupational Therapy (OT) designs purposeful activities to increase independence through fine motor skills. OTs help children to use adaptive equipment such as feeding, seating and bathroom aids.
  • Speech Therapy aims at improving communication. A child may only need help to overcome a slight articulation problem, or she may not be able to communicate verbally and may require a non-verbal communication system. Alternate communication systems can include synthesized and natural spech devices.
  • Music Therapy uses music for the treatment of neurological, mental or behavioural disorders.
  • New therapies are being developed all the time. Contact your local Cerebral Palsy Association for information on alternative treatments.

Orthotics, Casts, and Splints

Most children with CP will be prescribed orthotics, casts or splints to supplement their therapy programs. These should be custom made for the child and help to provide stability, keep joints in position, and help stretch muscles.

Medications

A child may take medication for conditions associated with their CP, such as seizures. Drugs may sometimes be prescribed for severe spasticity or painful spasms. Spasticity can be reduced by nerve blocking injections. A recent development is the infection of botulinum toxin ("Botox") into a spastic musle group. This can reduce tone for several months.

Surgery

  • Orthopaedic and soft-tissue surgery can help to counter the damaging effects of spasticiy on the spine, hips and legs. Surgery can lengthen or transfer tendons, enabling the child to move more easily. When the child has finished growing, bone surgery may help to reposition and stabilize bones.
  • Neurosurgery involves surgery on the nerve roots which control muscle tone. Selective posterior rhizotomy aims to reduce spasticity by severing some of the nerve roots in the spine.

Adaptive Equipment

An enormous range of aids and adaptive equipment are now available for people with disabilities. As the number of elderly people in Canada increases, more daily living aids are coming onto the market.

Mobility Devices include:

  • wheelchairs (manual, power and sports)
  • scooters
  • specially made bicycles and tricylces
  • walkers and crutches

Communication Devices include:

  • symbol boards
  • voice synthesizers
  • head sticks and keyguards for computers

Daily Living Aids include:

  • electronic door openers
  • large-handled eating utensils
  • grab sticks
  • environmental control systems

Some equipment is availble through provincial health and social service systems. These vary across the country. Your local Cerebral Palsy Association can advise you what is available in your area.


EDUCATIONAL SUPPORTS


Many children with CP will also have some type of learning disability. Assessment by a psychologist, and the support of special educators can reduce the handicapping effects of a learning disability.

Canada has some of the world's best "early intervention" programs. Children with CP will often start their education early to help improve their mobility and communication skills before starting school.

Most children with CP will receive an integrated education enabling them to mix with their peers in their neighbourhood school. A child with mild CP may simply require minor program adjustments. For example, he may need a little more time to write an exam if his hand control is poor. A child with more severe disabilities may require considerable support from resource staff and teaching assistants.

Children should have an Individualized Education Plan (I.E.P.) which assesses the child's performance, sets goals and specifies which supports are required. The amount of support offered, and the commitment to successful integration, varies widely between school boards and individual schools. A good partnership between parents and educators will help achieve their goals.

'The ultimate long-term goal is realistic independence. To get there we have to have some short-term goals, those being a working communication system, education to his potential, computer skills and, above all, friends'. - Parent of boy with CP


INDEPENDENT LIVING

The efects of CP are lessened considerably by an environment that enables people with disabilities to play a full part in their communities. It is never too early to start working toward future independence.

Barriers for people with disabilities, both physical and attitudinal, have lessened due to the efforts of disability groups and the support of social policy-makers. There is still much to do, but Canada can take pride in being one of the worlds most progressive countries on disability issues

People with cerebral palsy can live independently and be productive members of the workforce.

 

Living with CP

A person with CP has to cope both with disabilities and handicaps. A disability is a physical loss of function such as being unable to walk, having difficulty with hand control or speech. A handicap is the degree to which that disability puts you at a disadvantage in daily life. Fore instance, someone who is very short-sighted may be considered to have a disabilitiy, but she is unlikely to consider this a handicap if she has corrective lenses. A disability may prevent someone with CP from climbing stairs, but this will only be a handicap if the building whe wants to enter is not wheelchair-accessible. CP is not a life-threatening condition and, in itself, is no barrier to leading a long and produ tive life. People with CP enjoy satisfying careers, university education, social life, and become parents. Some limitiation are unavoidable, but very few people manage to achieve their dreams of becoming olympic athletes, concert pianists or brain surgeons.

The key elements to minimizing the handicapping effects of CP are:

Management and Treatment

Therapy, surger and the use of adaptive equipment help many people with CP to use their minds and bodies to their full potential.

Access

You cannot lead an idependent life if public buildings, washrooms and transportation are not accessible. To have a good career you need educational opportunities. To have a satisfying social life you need acccess to recreational facilities and opportunities to develop friendships.

Attitudes

It is very hurtful to have someone pat you on the head if you are sitting in a wheelchiar, or to walk away because they cannot understand what you are trying to say to them. Prejudice and teasing can be very damaging. A good sense of self-esteem is required to cope with these negative attitudes. Children can also be handicapped if they are over-protected and allowed to become too dependent. People with disabilites are people first and should never be described by such negative labels as 'wheelchair-bound', 'spastic', or 'afflicted with cerebral palsy'. All people share similar needs, desires, drives and responsibilities.


AGING AND CP

  • It is hard to generalize about how CP affects aging.
  • Although people with CP are considered to have a normal life expectancy, the physical challenges of CP may intensify with age (such as increased spasticity, fatigue, loss of strength and declining mobility).
  • A decline in mobility may be due to weight gain, lack of therapy and exercise, and the development of other conditions such as arthritis.
  • These physical challenges can in turn lead to increased stress and anxiety.
  • A positive attitude makes a big difference, and developing relaxation techniques and coping skills have a beneficial effect on mental and physical heath.
  • It can be frustrating for adults to deal with a health care system that appears to have little knowledge or interest regarding the changing needs of aging with a disability. A positive attitude makes a big difference, and developing relaxation techniques and coping skills can have a beneficial effect on mental and physical health.

MAINTAINING PHYSICAL & MENTAL HEALTH

A lifestyle that involves regular exercise and proper nutrition is important for everyone, including those with disabilities. A good general fitness level will help with range of motion and flexibility. Exercise to improve cardiovascular fitness can improve endurance and help offset age-related changes that lead to fatigue. A nutritious, high-fibre, low-fat diet will help avoid problems with constipation and weight gain and will increase energy levels.

Having CP does not make you immune to other condititions. People with CP are as likely as anyone else to contract heart disease, cancer or diabetes. Sometimes a change in the body can be put down to an effect of CP when it is actually a different condition.

The 1990s has seen a shift to a wellness concept of health care with emphasis on self-directed care that requires the individual to take responsibility for decisions and actions that affect their overall health. Individuals need appropriate knowledge, attitudes and skills to make these decisions. Learning strategies to increase independence and develop coping skills is a life-long process. Parents can foster attitudes that promote self-sufficiency and build self-esteem. Adults with disabilities need to learn to take an active role in their personal health management.

The importance of learning skills to increase independence and self-confidence throughout an individual's lifetime cannot be over-empasized. The stresses associated with aging will be lessened if a person is able to maintain a postivie personal attitude, if he is involved in meaningful activities, and if he has developed a supportive environment. He needs confidence to seek information, to plan for age-related changes, and to be an active participant in his healthcare and lifestyle choices.

    'Time and gravity are the enemies of every aging body, especially mine'. - Adult with CP
     







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The Cerebral Palsy Association of Manitoba is dedicated to enriching the lives of individuals affected by Cerebral Palsy through programs, advocacy, education, and peer support.
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