Cerebral Palsy PDF
Cerebral Palsy PDF
Cerebral Palsy PDF
Cere b ra l Pa l s y
This edition of A Guide to Cerebral Palsy has adapted material from several excellent publications and websites,
which outline the causes and effects of cerebral palsy:
A Guide to Cerebral Palsy
Dr. A. Mervyn Fox
Canadian Cerebral Palsy Association, 1991
Cerebral PalsyFacts and Figures
United Cerebral Palsy
(www.ucp.org)
Cerebral Palsy-Information kits for Educators and Parents
Cerebral Palsy Association of Manitoba, 1989
Cerebral Palsy Magazine
(www.cerebralpalsymagazine.com)
Children with Cerebral PalsyA Parents Guide
Elaine Geralis, 1998
National Institute of Neurological Disorders and Stroke
(www.ninds.nih.gov)
Ontario Federation of Cerebral Palsy
(www.ofcp.on.ca)
Published: 2006
Cerebral Palsy Association of BC
Written by Nan Colledge, 1999
2006 Addition Revised by: Jasmine Parbhu, members of the
CPABC Board, and CPABC staff
A Guide to
Cerebral Palsy
C e r e b r a l Pa l s y A s s o c i at i o n o f B r i t i s h C o l u m b i a
Guiding Principles
As the Knowledge Centre for Cerebral Palsy in the province of British Columbia, we are committed to the following Guiding Principles:
Contents
Introduction 4
What is Cerebral Palsy? 5
Common Misconceptions About CP 6
How Many People Have CP? 7
What Causes Cerebral Palsy? 7
Is CP Preventable? 9
Diagnosis of CP 9
The Human Brain 10
Types of CP 11
Treatment and Management of CP 13
Living with CP 20
A Parents Perspective 22
Aging and CP 25
What Research is Being Done on CP? 27
Additional Websites 28
CPABCYour Knowledge Centre 29
The Professional Team 30
Glossary 32
CP Associations in Canada 34
Introduction
Every person who has Cerebral Palsy (CP) is unique. Cp describes a variety of movement disorders, ranging from mild to severe, with differing
causes affecting individuals in many ways. If you are new to Cerebral
Palsy, you may find yourself struggling with a bewildering number of
medical and technical terms.
In Canada, people with disabilities have access to one of the widest ranges of support and therapy services, equipment, medical intervention,
educational and employment opportunities in the world. While having
CP does present some additional challenges, it does not need to be a
barrier to leading an enjoyable and productive life. Being well informed
about the options and opportunities available is a first step to successfully facing these challenges.
After Ive been tucked into bed at the end of the day, what
matters most is whether or not Im happy with who I am
and what Ive achieved, disability and all.
T. van der Kamp
During labour:
Premature delivery
Abnormal positioning of the baby (such as breech or transverse lie)
which makes delivery difficult
Small pelvic structure
Rupture of the amniotic membranes leading to fetal infection
Prolonged loss of oxygen during the birthing process
Effects of anesthetics or analgesics
Severe jaundice shortly after birth
Low Apgar score
Finding out your child has a disability: its not the end
of the world.
Dr. Mark Nagler, Ph.D.
Is CP Preventable?
Several of the risk factors for CP are preventable or treatable:
Diagnosis of CP
Doctors diagnose CP by testing an infants motor skills and looking carefully at the infants medical history. In addition to checking for symptoms
of slow development, abnormal muscle tone, and unusual posture, a
physician also tests the infants reflexes and looks for early development of
hand preference.
The doctor may also order specialized tests to learn more about the possible cause of CP. CAT Scans (Computerized Axial Tomography) and
MRI s (Magnetic Resonance Imaging) can identify lesions in the brain.
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Types of CP
Just as there are many different causes of CP, CP also 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 is related to the type of
movement disorder and/or by the number of limbs involved.
Classification by Number of Limbs Involved
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Once your childs unique needs and impairments are identified, a team
of health care professionals will work together to create an individual
intervention plan to address your childs needs. A typical intervention
team may include a physician/paediatrician, orthopaedist, physiotherapist, occupational therapist, speech and language therapist, social worker,
psychologist, and educator. See The Professional Team (p.30) for further information. Families or caregivers of individuals with CP are also
key members of the intervention team, and should be involved in all
steps of planning, making decisions, and applying treatments.
Individual/Family Supports
People living with CP, and their families, may need support to adjust to
this condition and all it entails. Parents and relatives may be angry their
child has CP or they may feel guilty or overwhelmed. Brothers and sisters
of children with CP may also need extra support.
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Therapy
Physical Therapy (PT) also called Physiotherapy, aims to help people
achieve their potential for physical independence and mobility. Physical Therapy, uses exercise and activities to improve range of motion and
other gross motor functions.
Occupational Therapy (OT) designs purposeful activities to increase independence through fine motor skills. OT s help children to use adaptive
equipment such as feeding, seating and bathroom aids.
Speech/Language Pathology (SLP) aims to help children communicate
with others. A child may only need help to overcome a slight articulation
problem, or she may not be able to communicate verbally and require a
non-verbal communication system. Alternative communication systems
include low-technological picture and symbol boards, to high-technological eye-gaze systems, blissymbol boards, and electronic voice
synthesizers.
Acupuncture involves inserting specially designed fine needles into specific areas of the body for therapeutic uses, to relieve muscle pain, or as
a regional anesthetic.
Aquatic Therapy involves PT in a warm water pool. It is not necessary to
know how to swim to do aquatic therapy. It can help relax muscles, improve body posture and balance, decrease muscle spasms, and increase
circulation.
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Neurobiofeedback involves training the brain to help improve its ability to regulate bodily functions. It helps with seizures, lowers stress and
anxiety, helps deal with depression, and manages pain and emotions.
Recreation Therapy uses sports and leisure activities as a form of therapy.
Recreational therapists work with children on such activities as dancing,
swimming, horseback riding, art, horticulture, and any other hobby the
child is interested in. Other activities may also include traditional sports
with or without equipment aids.
Sensory Integration Therapy helps to develop better sensory perception. The therapy, which is guided by the child and their interests, can
improve balance and steady movement, as well as help children learn
sequences of movements.
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get opinions and advice from various sources (not just doctors)
seriously consider the benefits and consequences of a particular surgery
before proceeding
consult with and consider the opinion of your child, and ensure that he
understands how he will be affected by surgery in the near- and long-term
future
Orthopedic and soft-tissue surgery can help counter the damaging effects of spasticity 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 reposition and stabilize the
bones.
Neurosurgery involves surgery on the spines nerve roots, which control
muscle tone. Selective dorsal root rhizotomy aims to reduce spasticity in
the legs by reducing the amount of stimulation that reaches leg muscles
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Symbol boards
Voice synthesizers
Head sticks and key guards for
computers
Specialized computer hardware
and software
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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 impairing effects of a learning disability.
Canada has some of the worlds best early intervention programs.
Children with CP will often start their education early to improve their
mobility and communication skills before starting school. The availability
of early intervention programs are often subject to government funding
and trained professionals.
In BC, children with CP receive an integrated education enabling them
to mix with their peers in their neighborhood 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 (IEP), which assesses the childs 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
children to achieve their goals.
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Living With CP
Impact on Family
Raising a child with CP can be a challenge for everyone in the family.
Parents love their child deeply and often are prepared to do whatever is
necessary to help their child achieve their potential. They may, however,
still face a mixture of conflicting emotions such as love and anger, hope
and despair, guilt and frustration. Brothers and sisters of a child living
with CP will also be greatly affected. Some children may feel resentful and neglected as their parents spend a great deal of time with their
sibling with a disability. Parents will need to support their able-bodied
children and help them understand and adjust to this new situation.
Raising a child with any disability will mean making changes in the family. Understanding the challenges theyll face, and committing to facing
them together, will provide the family with a strong foundation to stand
on and a secure base of support for all family members.
Growing Up With CP
CP doesnt have to stop children from going
to school, making friends or doing things they
enjoy; however, they may have to do things a
little differently.
People with CP are able to dance, play basketball, ski, cycle, etc. For the child with CP this
can reduce the amount of physical therapy a
child needs and receives. Remember, having
CP does not mean a person is unhealthy.
Interdependent Living
Paul Gauthier
Paralympic gold medalist
People living with CP are usually able to live independently in the community either with or without assistance. Adaptations in the home, such
as stairlifts and grab bars, can be made to make it more user-friendly.
Advanced technology, can help enable people living with CP to be productive, contributing members of society.
CP is not a life-threatening condition, and in itself, is no barrier to leading a long, satisfying life. People with CP enjoy many of the milestones
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the most people enjoy, including fulfilling careers, a university education, a social life and marriage.
Women with CP are as biologically and physically capable of having children, as they are of caring for and loving them. Arrangements can be
made to make pregnancy and the birthing process safer and easier for
someone with CP. As well, many adaptations can be made around the
home to enable caring for the child easier for parent(s) with CP.
A person living with CP has to cope with both disabilities and barriers. A
disability is a physical loss of function such as walking or difficulty with
hand control or speech. A barrier is the degree to which that disability
puts a person at a disadvantage in daily life; for instance, someone who
is very short-sighted may be considered to have a disability, but she is
unlikely to consider this a barrier if she has corrective lenses. A disability
may prevent someone with CP from climbing stairs, but this will only be
a barrier if the building she wants to enter is not wheelchair accessible.
Loss of function cannot be changed, but barriers can be removed.
Key elements to minimize the barriers experienced include:
Disability
is a loss of function
Barrier
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A Parents Perspective
By Cal Lambeth
My daughter was born nine weeks prematurely after my two-week stay in
hospital with ruptured membranes. She had to be resuscitated in the delivery room. She had no breathing difficulties and was soon transferred
out of the intensive care nursery. Five weeks later, still a month ahead of
schedule, we took her home.
I remember that time as a difficult one of adjustment. She was our
first baby. Things just hadnt gone according to script. I felt both she
and I had been cheated out of those important nine weeks in the womb.
These negative feelings were those of many new mothers and they did
not relate to any anxiety about her long-term health. Rather nave, I had
considered that her birth circumstances were either do or die. She
would be born and survive with no further problems, or she would die
(probably from breathing difficulties). I was unaware of the increased
risk of many disabling conditions which prematurity creates.
Over time I began to notice things about her. She was irritable and
colicky. She couldnt seem to master breast-feeding as her tongue kept
thrusting out. Her head control was very poor. She kept arching her back
to look over her head. For a time we all found this amusing, thinking
that the ceiling fascinated her. Her right hand remained almost always
clenched. Her legs seemed stiff and her feet scissored. Gradually, private
little fears began to creep in, but I held them off as merely relating to her
prematurity.
Because of her premature birth she became involved in a study of
lung maturity. This necessitated follow-up with certain health professionals over the course of the year after her birth and it was as a result of
this study that we received a diagnosis. When she was about 11 months
old, a pediatrician at one of these meetings merely said, Youre aware
that she has Cerebral Palsy. She was described as mild to moderate. I
was absolutely devastated. I remember clutching her and sobbing, My
poor baby! It was like a scene from a bad movie and I still remember
it vividly. Later, doctors apologized for this rather blunt and unprepared announcement. It seemed that they had been concerned about her
condition for some time but were monitoring it and didnt want to say
anything until they were sure of the diagnosis. Although I appreciated
their goodwill, I questioned the withholding of this information. They
couldnt shield me forever and, in my opinion, my daughter was losing
valuable time in which to begin physiotherapy.
Thus began our lives as Parents of a Special Needs Child. Those were
bleak days. I was despondent, panic stricken, and felt that life would never be good again. My career plans were destroyed. Looking back at this
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time I realize how bitter and hostile I was. I found it difficult to maintain close relationships with people who had children similar in age to
my daughter. I wanted to scream when they complained that their child
was into everything while mine lay flat on the floor, unable to sit or
crawl. I also felt angry when people told me how marvelously I was coping. I felt neither marvelous, nor that I was coping well; furthermore,
it seemed that this was an indication of their view that my child was a
burdenprivately, I felt this way myself at times. I suppose this all represented a fairly typical and predictable process.
Although I presented a bold front to those around me, the truth of
the matter was that I was depressed and frightened. I was fortunate to
have a family, which offered physical help and a listening ear. Not everyone is so lucky. I strongly felt the need to talk to others about their
own experiences. My first thought was to look up Cerebral Palsy in
the telephone directory. I took a deep breath and called the number of
the Cerebral Palsy Association, determined to be strong and in control.
Shortly into the conversation I broke down, but the woman I spoke to
was kind. She offered the information that her husband had CP and that
they were expecting their first child. These words gave me a new sense of
what the future could hold. CP was not a death sentence. My child could
grow up, be happy, and lead a life of purpose. At least the possibility was
there. From this conversation I received information about parent support groups, which I attended for a time and found valuable. But the
most important fact was that I had taken some action. This small step
had helped to allay the sense of aloneness and had given me a renewed
sense of control.
Our family is now much like any otherenjoying the excitement of
new achievements and the ups and downs of child rearing. It would be
wrong to claim that all of the emotional and psychological hurdles have
been overcome. As our child matures new challenges present themselves.
We are always seeking new ways to adapt her physical environment to
allow greater independence. We want to encourage self-esteem, and
pleasure in new achievements. We are not experts in these matters, but
have learned to rely upon our common sense and the knowledge and expertise of those we trust.
A Parents Perspective
By Conrad van der Kamp
Recently I was asked: so whats the special role of a Dad in the life of a
child with CP? Whats the role of a Dad in any childs life? Its all about
providing, safeguarding, teaching, hugging tightly and encouraging.
And its also about encouraging from the sidelines and standing back
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when your child stumbles. It involves making room and letting go.
Letting go is pretty tricky, especially when the child faces unusual obstacles and a little help would help so much. Do you want a hand with
that sleeve? You want me to cut that sandwich? How about I proofread
that essay? I know you can do that transfer, but its so much faster if I
justand so on. When our daughter was little I would swing her in and
out of cars, into her wheelchair, and into bed. When she got older, I could
still lift her in and out of cars. It was just easier; faster and easier. Well yes,
maybe easier, but maybe not so smart. Not so smart for my back in any
case, but also not smart as a way to affirm the young woman that she had
become. I had to learn, and am still learning, to adapt to her rhythms and
her timing; learning to let her lead.
It was the same with schoolingI wanted to wade in, shape everybody up, and have them really see this soft-spoken plucky girl instead
of the wheelchair. I wanted to guard her from offhand cruelty, from casual inattention, and from well meant but patronizing gestures. At the
same time, I wanted to constrain her to act
normal, talk normal, and to disappear into
the crowd. Well I couldnt accomplish any of
those. In the end I came to acknowledge that
she was pretty good herself at dealing with
all the indignities. She was pretty darn good
at skippering to her goals and awfully darn
good at reading people along the way.
So now I sit at the table in her cheery,
bright apartment, while one of the attendants
she has hired is bustling about. My daughter gives me instructions. Sometime, if you
Tammy van der Kamp
want, Dad, I could use, and pretty soon
Im fixing a loose cupboard door, or maybe Im just digging some bulbs
into her patio border, happy that Im still in the game. I can still fix things
at least a little bit. Then the thought crosses my mind that maybe she figures shes the one helping me by giving me some tasks. I straighten up
and scratch my head for a moment, trying to get used to that idea, and
then I get on with the digging.
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Aging and CP
No two people, including those with CP, will experience the aging process in quite the same way; however, one thing is certain, like all of us,
they will slow down as they age.
People with CP are considered to have a normal life expectancy; however, the physical challenges of CP may intensify with age; for instance,
increased spasticity, fatigue, loss of strength, and declining mobility. In
addition, adults living with CP may deal with many of the usual physical
problems of aging at a much earlier age than people without disabilities.
Chronic pain
Physical fatigue
Arthritisbecause of repetitive motions such as pushing
wheelchairs or leaning on canes
Osteoporosiswhich may lead to such secondary complications
as hip fractures
Bowel and bladder problems
Increased respiratory problems
Decreased reproductive and sexual functioning
Like many aging people, those with CP may face greater isolation and
loneliness because of their physical inability to get around as easily as
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others. Their decreased mobility can sometimes put them at greater risk
for abuse and victimization. This abuse can be physical, financial, sexual
or emotional in nature.
Coping with the Aging Process
A lifestyle that involves regular exercise and proper nutrition is important for everyone, including those with disabilities. Exercise may just
seem like one more thing to fit into a schedule already overwhelmed by
the demands of everyday life: work, school, medical appointments and
social activities. A good general fitness level will help maintain range
of motion and flexibility. Exercise to improve cardiovascular fitness can
also improve endurance and physical strength, thus helping to offset agerelated changes that lead to fatigue.
When dealing with fatigue, people with CP can take steps to make sure
they dont get over-tired. They should realize their limits and take breaks
or rest when feeling tired or in pain.
Methods to lessen pain may include: avoiding physical exertion, taking pain medications such as Diazepam or over-the-counter analgesics
or using interventions such as tendon-release Morphine and Baclofen
pumps. Psychological counselling and biofeedback may also help to reduce pain. People with CP feeling lonely or isolated may also benefit from
participation in leisure activities targeting people with disabilities, from
counselling, or by sharing their feelings with someone they trust.
Everyone needs a proper attitude, knowledge, and skills to make wellinformed decisions concerning their health and well-being. Adults with
disabilities need to learn to take an active role in their personal health
management. It is well known that stresses associated with aging are
lessened if a person is able to maintain a positive personal attitude, is
involved in meaningful activities and has developed a supportive environment. For a person living with CP it is wise to seek information, to
plan for age-related changes, and to be an active participant in his health
care and lifestyle choices.
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What are the factors that predispose the developing brain to injury?
Can these factors be eliminated or minimized?
How do associated risk factors relate to the severity of CP?
What are the causes of injury to the developing brain? Can the
developing brain be protected? What are the causes of developmental
delays and failure to thrive?
Why is a low birth weight in full-term and premature infants a important risk factor for CP? How do infections, hormonal problems,
etc. increase the chance of a premature birth?
Can CP be diagnosed before birth and/or better diagnosed shortly
after birth? Can current diagnostic aids be improved to give more
accurate results in the diagnosing of CP?
Can the injured brain cells of persons with CP be repaired or
re-grown?
Which treatments are most effective in dealing with the physical
limitations of CP? How effective are existing treatment/management
strategies?
What are the effects of aging on the person with CP?
Based on new developments in the medical, surgical, behavioral, and
bioengineering sciences, what improvements can be made in the
quality of life of people with CP?
What are the social and emotional effects on the child growing up
with CP? How can she be helped to develop a positive self-image?
What obstacles does society create for persons with disabilities
(including CP)? How can these be overcome?
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Web Sites
Web sites change quickly and this information will date. The following
may be good starting points to link you to further information and other
organizations.
www.vcpgv.org
Web site of the Voice of the Cerebal Palsied of Greater Vancouver.
www.cerebralpalsymagazine.com
Web site for the official Cerebral Palsy Magazine printed quarterly every
year, focusing on issues concerning CP.
www.ucp.org
National homepage of United Cerebral Palsy, the leading source of
information and advocacy for people with CP in the United States.
www.ninds.nih.gov
Research information from the National Institute of Neurological
Disorders and Stroke of Maryland.
www.scope.org.uk
Scope, formerly The Spastics Society, is the largest charity working
with people with disabilities in the U.K.
www.aacpdm.org
Web site for The American Academy for Cerebral Palsy and
Developmental Medicine.
www.diversityworld.com
Diversity World offers information and resources concerning
employment issues for persons with disabilities.
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Glossary
Analgesic: A medication that reduces or
eliminates pain.
Anesthetic: A medication that causes
temporary loss of bodily sensations.
Apgar score: A system of evaluating a
newborns physical condition by assigning a
value (0, 1, or 2) to each of five criteria: heart
rate, respiratory effort, muscle tone,
response to stimuli, and skin color.
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CP Associations in Canada
British Columbia
Tel: 604.408.9484
Fax: 604.408.9489
Toll Free: 1.800.663.0004
Tel: 204.982.4842
E-mail: info@bccerebralpalsy.com
www.bccerebralpalsy.com
Alberta
Saskatchewan
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Manitoba
E-mail: office@cerebralpalsy.mb.ca
www.cerebralpalsy.mb.ca
Ontario
Qubec
New Brunswick
Nova Scotia
Newfoundland
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bccerebralpalsy.com