The Cerebral Palsy Page  

My Experience Of Life With CP

My name is Valerie and I have Ataxic CP on my left side.  My CP was caused by one of the causes mentioned below, RH blood incompatibility between my parents.  I used to joke to people that this was no surprise to me because my mom & dad weren’t compatible in much.  They did, however, manage to survive raising 9 children together; of whom I am the youngest.

Today, I am the happily married mother of 4 great kids of my own.  Longer ago than I care to admit, I graduated from college and now work for a Center for Independent Living full-time.

Having CP affects the way I walk, my sight, dexterity and motor control.  Doctors told my parents that I had CP when I was about 9 months old and said that I would probably not walk until I was 2 or 3 years old and that I might be “mentally retarded”. They were wrong. I soon began therapy to help me learn to move more easily and build muscle strength.  At the age 11 ½ months and on legs 2 inches different in length, I took my first independent steps & I’ve been on the go ever since.  When I was 3 I underwent an operation on my left leg enabling it to “catch up” in length with my right leg.  As an adult although my left leg is noticeably smaller than my right, I have no great difficulty walking.  CP affects the coordination & strength of my left arm & hand.  For this reason, I am creative when it comes to accomplishing daily tasks.  I do everything essentially one-handed, from curling my hair to catching fish to typing on a computer.  People seem to be amazed at the things I can do with 1 hand that most people do with 2.  I guess I just see it as learning how I can do the things I want to do.
 
One of the hardest things about having a disability is that some people tease or treat people with disabilities inappropriately simply because they seem different, without ever truly taking the time to find out who the individual really is.  As an adult, I understand those people who tease or belittle others are afraid of what they don’t know.  I believe that as a person with a disability, it is my job to educate those who don’t have a disability so they will no longer be afraid of those who do.  

CP Info:

The words Cerebral Palsy are used to describe a medical condition that affects control of the muscles. Cerebral means anything in the brain, and palsy refers to anything wrong with control of the muscles or joints in the body.  If someone has cerebral palsy it means that because of an injury to their brain they are not able to use some of the muscles in their body in the way most others’ without cerebral palsy use theirs. Individuals who have cerebral palsy (CP), may not be able to walk, talk, eat or play in the same ways as most other people.  CP is not a disease or illness. It isn't contagious and it doesn't get worse.  So, if it’s not a disease, how do you get CP?

Cerebral palsy is caused by an injury to the brain before, during, or shortly after birth. In many cases, no one knows for sure what caused the brain injury or what may have been done to prevent it. Sometimes injuries to a baby's brain happen while the baby is still in the mother's womb (before birth). The injury might be caused by an infection or by an accident in which the mother is hurt. If a mother has a medical problem such as high blood pressure, or diabetes, this can also cause problems for the baby. There may be problems during birth such as the baby not getting enough oxygen, or a complicated delivery in which the baby's brain is injured.  Problems after birth may happen when a baby is born too early (premature delivery) and his/her body is not ready to live outside the mother's womb. Even babies born at the right time can have infections, or bleeding in their brain which causes a brain injury because the brain is still developing even after birth. The causes of cerebral palsy include illness during pregnancy, premature delivery, lack of oxygen supply to the baby; or it may occur early in life as a result of an accident, lead poisoning, viral infection, RH or A-B-O blood type incompatibility between parents, infection of the mother with German measles or other viral diseases in early pregnancy, and microorganisms that attack the newborn's central nervous system.  The most important thing to remember is that you do not "catch" CP from another person, and you do not develop CP later in life.  It is caused by an injury to the brain near the time of birth.  Education, therapy and applied technology can help persons with cerebral palsy lead productive, independent lives.  

The effects of CP can range from mild to severe.  Cerebral palsy is characterized by an inability to fully control motor function. Depending on which part of the brain has been injured and the degree of involvement of the central nervous system, one or more of the following may occur: spasms; tonal problems; involuntary movement; disturbance in gait and mobility; seizures; abnormal sensation and perception; impairment of sight, hearing or speech; and in some cases cognitive disabilities.  Intervention strategies may include:  speech and language therapy, occupational therapy; physical therapy; medical intervention; family support services, early education; and assistive technology.  

Persons with cerebral palsy are typically able to achieve independent lifestyles.  The HEATH Resource Center, the clearinghouse on postsecondary education for individuals with disabilities, states that a significant number of students with cerebral palsy are enrolled in colleges and universities.  Important advances have taken place in the last 15 years which have had a great effect on the long-term well-being of individuals with cerebral palsy. Advanced technology, including computers and engineering devices, have been instrumental in the independent lives of many persons with cerebral palsy. Technological innovations have been developed in the areas of speech and communication, self-care, and adapting living environments and work sites.   

Between 500,000 - 700,000 Americans have some degree of cerebral palsy. About 3,000 babies are born with the disorder each year, and another 500 or so acquire it in the early years of life.  Individuals with CP have damage to the area of their brain that controls muscle tone. Depending on where their brain injury is and how big it is, their muscle tone may be too tight, too loose, or a combination of too tight and loose. Muscle tone is what lets us keep our bodies in a certain position. Changes in muscle tone let us move in our environment.  The type of CP an individual has will to a large extent determine the difficulty with body movement & coordination that person experiences.  

Basic types of CP. 

Spastic Cerebral Palsy - muscle tone is too high or too tight, the term spastic is used to describe the type of cerebral palsy. People with spastic CP will typically have stiff and jerky movements because their muscles are too tight. They often have a hard time moving from one position to another or letting go of something in their hand. This is the most common type of CP. About half of all people with CP have spastic CP. 
Ataxic Cerebral Palsy - Low muscle tone and poor coordination of movements is described as ataxic CP.   Individuals with ataxic CP may appear unsteady and shaky. They may experience tremors in their limbs, especially when trying to do something like write or turn a page or cut with scissors. They may have poor balance and may be unsteady when they walk. Due to these shaky movements and problems with muscle coordination, people with ataxic CP may need more time with task completion.  

Athetoid Cerebral Palsy - The term athetoid is used to describe the type of cerebral palsy when muscle tone is mixed - sometimes too high and sometimes too low. Individuals with athetoid CP may have trouble holding themselves in an upright, steady position for sitting or walking, and movements of their face, arms or upper body that they don't mean to make (involuntary movements).  About one-fourth of all people with CP have athetoid CP.   
Mixed Cerebral Palsy - Mixed CP is the term used to describe the type of CP a person has when they have characteristics typical of more than one of the three other types of Cerebral
Palsy. This could be any combination of the characteristics of Athetoid, Ataxic, and Spastic.

There are five general terms used to describe what part(s) of an individuals’ body affected by CP.  These terms are sub-classification of Cerebral Palsy: 
Diplegic - affects either booth arms or booth legs
Hemiplegia- affecting the limbs on only one side of the body
Quadriplegia- affecting all the limbs
Monoplegia* - affecting only one limb
Triplegia*- affecting three limbs Potential secondary disabilities associated with CP

Talking and Eating - Just as CP can affect the way a person moves their arms and legs, it can also affect the way they move their mouth, face and head. This can make it hard for the person to speak clearly and to bite, chew or swallow food.  Learning Disabilities - About one-fourth to one-half of people with CP also have some difficulty learning via conventional means. 

Seizures - About half of all children with CP have seizures. Often, this happens in the same place as the brain injury that caused the CP.  A seizure is a series of abnormal messages being sent out very close together. These abnormal messages may cause someone to stare and stop moving during a seizure, or may cause them to loose control of their body and fall down. Some people show shaking movements all over when they are having a seizure. Seizures usually last a few seconds to a few minutes, and in most case are not fatal. Medications may help prevent seizures or reduce the number of seizures they have. Therapies commonly used for the effects of CP on the body.  Physicians typically prescribe drugs to control seizures for those who experience them and to lessen muscle spasticity.   Surgery is often recommended when contractures are severe enough to cause movement problems. In the operating room, surgeons can lengthen muscles and tendons that are proportionately too short.     

Physical therapy - whether for movement, speech, or practical tasks -- is a cornerstone physical treatment of problems related to cerebral palsy.  Physical therapy usually begins in the first few years of life, soon after a diagnosis of CP is made. Physical therapy programs use specific sets of exercises to work toward two important goals: preventing the weakening or deterioration of muscles that can follow lack of use (called disuse atrophy) and avoiding contracture, in which muscles become fixed in a rigid, abnormal position.  For those who have difficulty with speech tasks, therapy works to identify specific difficulties and overcome them through a program of exercises.  Speech therapy can also work to help the child learn to use communication devices, such as a computer with voice synthesizers.  Behavioral therapy may provide yet another avenue to increase abilities. This therapy, which uses psychological theory and techniques, can complement physical, speech, or occupational therapy exercises.