For archaeologists in 1898 conducting excavations the Valley of the Kings of Egypt, finding the mummy of pharaoh Siptah (r. 1197–1191 BCE) was exciting. A while later, upon opening the ancient stone sarcophagus, the archaeologists, discovered something astonishing. The skeletal remains of the ancient king showed the ruler had a severely deformed left foot; this represented the oldest physical evidence of cerebral palsy (CP) or polio (the scientific community is not in agreement on this issue). Like other pharaohs, Siptah was regarded a living god. By contrast, several ancient Greek writers testified to the fact that babies born with physical disabilities were usually abandoned in the wilderness. Nowadays, of course, people with CP are neither venerated nor discarded. When most people hear about CP, however, they imagine a somewhat amorphous group with a common condition, rather than the unique story each individual has.
National Cerebral Palsy Month, held each year in March, seeks to change that, educating the public on the range of disabilities CP encompasses and the diverse range of abilities these people have.
This month also acknowledges self-advocacy among persons with CP, acknowledging that they are proud of who they are and, equally important, emphasizing all they can and have accomplished, thereby focusing on ability rather than disability. United Cerebral Palsy (UCP) is an advocacy organization with regional resources throughout the US and internationally, provides a wealth of information on what people with CP and their families can do. In fact, people with CP have succeeded in nearly every occupation. The theme is: “My child without limits.”
What Cerebral Palsy Is
Cerebral palsy is a neurologic disorder affecting muscle coordination and movement. Some people with CP have difficulty with speech or swallowing. Most often, the onset of occurs CP during pregnancy; it may also manifest during childbirth or shortly thereafter. It can be caused by brain injury or certain infections or prolonged lack of oxygen to the brain. “Cerebral” refers to the head (the brain), and “palsy” to impaired motor functioning. Cerebral palsy presents a wide variety of symptoms. The three most common variants of CP are:
- Spastic CP. This is the most widespread type of CP. People with it experience increased muscle tone, and their movements often appear stiff or awkward. Different parts of the body can be affected. Of this type, hemiplegia—the paralysis of one half the body – is the most common.
- Ataxic CP. People with ataxic CP have poor muscle tone; they experience tremors or shakes, especially when they perform fine-motor tasks.
- Dyskinetic (Athetoid) CP. This type of CP is characterized by slow, involuntary movements of the arms, legs, and torso.
As with many disabilities, there is no cure for CP. However, the conditions of CP can be ameliorated with physical and occupational therapy, offering some individuals enhance control over their limbs and both gross- and fine-motor activities. Physical or pharmacological therapy can help with managing chronic pain. Speech therapy, offers some individuals can have greater control over speech (dyspraxia) and swallowing (dysphagia). An then, being engaged with leisure and social activities, often through recreation therapy, offers a strong sense of self-fulfillment and independence. Another notable option for many is hippotherapy, special therapeutic horseback riding. The gait of the horse is similar to the movement of the human pelvis, which enables the person with CP to experience a novel sense of freedom in movement. In addition, a variety of assistive-techology devices, from motorized wheelchairs or orthotics to special switches and augmentative and alternative communication devices, can offer greater independence. Indeed, the journey is rarely easy, but a better quality of life is always possible. A detailed and useful fact sheet on CP is available online.
The physical disabilities of CP include the following:
- Difficulty or inability to walk
- Lack of use or limited use of limbs
- Delayed growth and development
- Hearing loss
Some people with CP also have cognitive disabilities, including the following:
- Speech and language – a lack of speech or slow, labored talking.
- Executive function, such as setting goals
764,000 people in the U.S. have some form of cerebral palsy. About 8,000 – 10,000 babies born in the U.S. each year are born with or will develop cerebral palsy. It is the most common physical disability in childhood. Worldwide, more than 17 million people have cerebral palsy.
A Brief History in Time
Dr. William John Little (1810-1894) first person to study CP, describing the condition in his 1853 paper, On the Nature and Treatment of the Deformities of the Human Frame. Some eight years later, in 1853, Dr. Little established the classic definition of (spastic) cerebral palsy in a lecture to the Obstetrical Society of London. Sir William Osler (1849-1919) wrote the first book on cerebral palsy, The Cerebral Palsies of Children (1889), coining the term we use today. Sigmund Freud (1856-1939), better known for his school of Psychoanalysis, recognized that CP was likely caused by problems occurring very early in the development of the brain and central nervous system, certainly before birth. The history of the “discovery” of CP is a fascinating one.
Some Interesting Things to Know
The oldest written mention of cerebral palsy is On the Sacred Disease, penned by a follower of the great Greek physician Hipporcrates (ca. 460-370 B.C.E.). The term sacred disease referred to epilepsy, a condition with which CP was often confused.
Stephen Hopkins (1707-1785), born with a form of cerebral palsy, accomplished a great deal in Colonial Providence, RI. When he added his signature to the Declaration of Independence, he said, “my heart trembles, but my heart does not.”
August 11, 1950, a group of parent advocates of children with cerebral palsy formed a group called United Cerebral Palsy Associations of New Jersey. Later, in 2001, the organization changed its name to Cerebral Palsy of New Jersey. Seven years later, in 2008, in recognition that the agency was supporting people with all disabilities, it changed its name one more time. Today, we know that agency as Advancing Opportunities.