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The World of Cerebral Palsy

Today’s post is dedicated to World Cerebral Palsy Day, Thursday, October 6.

Cerebral palsy is one of those disabilities that everyone has heard of but few (outside of the 17 million families who personally live with it) really understand. Ask the average person on the street, and they probably won’t know more than “it’s when something goes wrong in the brain so a person has trouble walking and talking.” Or they may have highly, even wildly, distorted ideas.

Let’s start by clarifying what cerebral palsy (CP) is not.

Misconceptions and Facts

Misconception: CP is a single disorder.

Fact: In medical terms, “cerebral palsy” is any of a group of disorders with the common symptom of affecting muscle control. All forms are due to atypical brain development, but specific causes vary. (Known risk factors include premature birth and prenatal exposure to certain drugs or viruses.)

Major categories of CP (they all have subcategories) include: spastic (stiff muscles), which comprises over 75 percent of diagnosed cases; dyskinetic (shaky or uncontrollable muscles); ataxic (unsteady muscles/poor balance); hypotonic (loose muscles); and mixed (including symptoms from two or more of the other categories).

Misconception: People with cerebral palsy have low IQs or diagnosable mental impairments.

Fact: Some do, but it’s not universal. (Other common-but-not-inevitable side effects include epilepsy, vision impairment, hearing difficulties, speech impairment, or curved spine.)

Misconception: When someone has CP, the effects are always obvious.

Fact: As with most illnesses and disorders, CP has a “spectrum.” Individual symptoms may be as severe as total paralysis or as minor as a limp.

Misconception: CP gets worse over time.

Fact: While true of many neurological disorders, this is not characteristic of the CP group. Symptoms usually appear in infancy, and subsequent changes (if any) are connected to ordinary growth and aging developments, rather than the palsy itself.

Misconception: CP shortens a person’s life expectancy.

Fact: Where CP and general health are properly managed, difference from the average is negligible. (If symptoms are severe, however, ongoing medical supervision is essential to maximize health and life expectancy.)

Living with Cerebral Palsy

The most dangerous misconception of all is that cerebral palsy condemns anyone to a life of helpless dependency. It’s dangerous because where caretakers believe it, health and abilities may atrophy because the child is never given a chance to work hard, exercise, or visualize success.

People with CP have skills, intelligence, and dreams like everyone else, and they deserve encouragement in working toward their full potential. It helps to start individualized professional therapy early on, teaching children to appreciate their own capabilities from the beginning.

For the “inside scoop” on living with cerebral palsy, BridgingApps contacted Matthew Stephenson, one of our app reviewers, who has CP.

BridgingApps: Besides the mobility difficulties, what about CP do you find hardest to deal with?

Stephenson: My CP is mild, and sometimes it’s as if I’m straddled between the able-bodied and disabled worlds. I know that I must do what best helps me cope, but using a mobility scooter in public still feels awkward. I always half expect to get weird looks—“you’re young, stop joyriding that scooter”—even though I’m not sure I ever actually have.

BridgingApps: So you feel you still stand out, that you don’t get enough opportunities to just be one of the group?

Stephenson: Well, for me, a good coping mechanism is video games. Online, nobody knows I’m disabled: I can just be a regular gamer. And that’s a very nice feeling to have, that you’re on an even playing field, sharing fun and enjoyment.

Another coping mechanism is watching YouTube. That’s where I go to learn about new developments in the tech world that would benefit me. I also enjoy movies—especially Disney, Studio Ghibli, and Japanese anime. Getting wrapped up in favorite movies is a great stress reliever.  

BridgingApps: You’re luckier than some people with cerebral palsy, in that you don’t need adaptive technology to use a computer. What tech do you use regularly, besides the programs already mentioned?

Stephenson: My favorite apps are for chat and messaging: Telegram, and to a lesser extent Discord. Most of my friends—we’re all young adults—are on Telegram and Discord, which are easy and fun ways to reach them.

I especially love Telegram because it is endlessly customizable. Users can adjust chat background, color, and size. They can send stickers, both still and animated; and if sensitivity to flashing is a problem, all you have to do is turn off the “loop animated sticker” setting. 

BridgingApps: What about in-person inclusive activities?

Stephenson: Camp For All (Burton, TX) and TSBVI (Texas School For The Blind and Visually Impaired, in Austin) are definite blessings. They’re adapted so I can do anything I want. When I was a kid, I attended Easter Seals Greater Houston’s Camp Smiles and TSBVI’s summer programs, which are also set up in a way where anyone can do anything. That’s an invaluable experience everyone should have.

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