Not the Same

As I've read and watched stories shared by people living with cerebral palsy (CP) and their families, I've found that one message appears every time: We are not the same as one another. Each of us is unique, with a different set of strengths and needs.

And so, I'd like to begin each post by sharing a story from a different person affected by CP. I'll also post resources on the right, mostly blogs from people living with CP and their caregivers, to highlight the diversity that exists within this set of disorders.

The first story is Maysoon Zayid's, a comedian living with cerebral palsy.

Not only does each individual living with CP have an entirely unique set of physical symptoms, but each person has developed their own way of thinking about, describing, and coping with their own CP.

Cerebral palsy isn't just one disorder-- it's the name of a group of movement disorders. All of these many versions of CP are grouped together because they each limit activity and motor control, and have all been linked to interrupted development of the affected person's brain either in utero or as an infant.

Unlike other disorders affecting muscle control, such as amyotrophic lateral sclerosis (ALS) or multiple sclerosis (MS), cerebral palsy is present and can show signs from the time of birth, and its affects normally do not increase over time. In fact, with physical therapy and consistent support, some people born with CP do gain the muscle control they need to walk, write, communicate clearly, and live independently. CP also does not affect a person's intelligence or their ability to relate to others-- although they are traced back to the brain, the CP disorders are movement disorders, not cognitive disabilities.

Each person's CP can be classified both by the number of limbs affected, and by the loss of muscle control experienced.

Source: infographiczone.com

The number of limbs involved varies from monoplegia, with one limb (usually an arm) affected, to quadriplegia, with all four limbs affected. For some people with CP, control of speech and swallowing can also be difficult.

Muscle control changes can be spastic, or tight and rigid (the most common ; athetoid, limiting control and coordination; ataxic, affecting balance and movement through space; or mixed, combining parts of these three categories.

Next week, I'll be posting on the epidemiology of cerebral palsy, or how and why researchers currently think it affects certain people, and how we might be able to reduce it-- and sharing another story from a person affected by CP.