What does Cerebral Palsy Mean to a Family?
Cerebral palsy can't help but have an impact on the individual and their family. The degree to which the disease affects the body depends on the type of cerebral palsy the person has as well as on the degree of affliction.
The type of cerebral palsy affects the way the family is impacted. There are several types of cerebral palsy :-
- Spastic Cerebral Palsy. This is the most common type of CP. In fact, 80 percent of cerebral palsy is of the spastic type. These patients have severe stiffness of the muscle groups that limit movement of the muscles, leading to stiff, jerky ways of moving. The arms and legs can be involved, the trunk can be involved, half the body (left or right) can be involved as well as just the arms or just the legs. Holding things or letting go of things can be difficult.
As to the impact of the family, it can be great. The child may be wheelchair bound or might need to ambulate with a walker or crutches, making it difficult to have stairs or steps in the home. Adjustments for wheelchairs or people with difficulty climbing stairs must be undertaken as the child becomes more mobile.
The child, having difficulty gripping things, may not be able to hold a fork or spoon for feeding. They may or may not have the ability to eat food, even with assistance. A tube may need to be inserted into the child's stomach to give them enough calories to gain weight or maintain their body weight.
The child with CP will not likely be able to bathe and dress themselves on their own. Parents, siblings or other caregivers may need to completely bathe the child and apply clothing. Clothing must be comfortable and easy to put on given the fact that the child's extremities might be stuck in certain positions, unable to bend or move in the act of dressing.
- Athetoid Cerebral Palsy. This type of cerebral palsy affects about 10 percent of afflicted patients. It is caused specifically by cellular damage to the basal ganglia or the cerebellum in the brain. Movements of the body are not coordinated or smooth and body posture cannot easily be obtained. There can be involuntary, purposeless movements of the body, particularly movements of the arms, face or trunk.
A child with athetoid cerebral palsy will have problems swallowing food due to thrusting motions of the tongue and involuntary grimacing movements of the face. If insufficient quantities of food can be taken in, the child will need a gastrostomy tube in their stomach so that liquid nutrition can be given to the child so he or she gains weight or at least doesn't lose weight. There can also be drooling, which can be unsightly.
Speech can be slurred so that the child has a problem getting his or her needs across to caregivers. They can have problems making friends and are often bullied because of their unusual speech. They often need to be treated with speech therapy so that they can communicate with friends and family.
Kids with athetoid cerebral palsy often have low, rather than high, muscle tone. Maintaining posture for periods of time is difficult and they can't really sit or walk very well. For this reason, they may need to wear braces to help them sit and may need to use a wheel chair or walker. This means that the home must be well set up for a child that cannot do stairs or steps.
- Ataxic Cerebral Palsy. This type of CP affects about 5-10 percent of all cases of cerebral palsy. The key feature is low muscle tone associated with poor muscle coordination. They are very unsteady on their feet and their muscles appear shaky. Balance and depth perception are affected; kids with this disorder have a wide based gait and are unsteady on their feet. They are uncoordinated with regard to walking, other large motor skills and small motor skills. They often have a tremor, similar to that seen in the aged person. Their small motor skills are often so poor that they cannot write or draw.
A child with ataxic cerebral palsy may or may not be ambulatory. Even if they are ambulatory, the family may need to move to a house without stairs or be prepared to carry the patient up and down their stairs.
The child may need to have a tutor or occupational therapy to help them get the skills they need to write. They may be unable to write and must learn in school using ways that do not involve writing skills. Other fine motor skills can be involved so that interactive play with other children is inhibited. This is a child that can easily be bullied by other children and can have trouble making friends.
- Mixed Cerebral Palsy. Almost ten percent of kids with CP have what's known as mixed cerebral palsy. The muscles are tight in the same way as spastic cerebral palsy; the child also has the involuntary motions of athetoid cerebral palsy. They have damage to two different parts of the brain: the extrapyramidal parts and the pyramidal parts of the brain. Spastic changes are usually seen first, followed by involuntary movements, which show up between 9 months of age and three years of age.
These kids have difficulty with ambulation and posture. They may need a specialized wheelchair to accommodate their lack of ability to walk safely. Some kids can manage with a walker, however. Speech is often affected so the child has problems communicating his or her needs to the family. The child may also have difficulty with small motor skills, such as with playing with toys and writing. The family may need to come up with alternative ways of having the child write or play as they get older.
Regardless of the type of cerebral palsy the child has, the impact on the family is great. The child with CP will not outgrow it and will continue to be dependent on family for his or her whole life.
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The author of the substantive medical writing on this website is Dr. Christine Traxler MD whose biography can be read here