Disability 101 Part 2: Cerebral Palsy

Hello readers, and welcome back to class. Today’s topic is cerebral palsy, hereafter known as CP. It’s the disability I have, so in some respects it’ll be easy to write about, but I wanted to go ahead and get this one done because, since it is the one I have, I might otherwise forget. So here we go.

What is CP?

Some people believe CP is a purely physical disorder, mostly because it heavily impacts muscle movement, coordination, and things of that nature. However, it is not purely physical, even if the symptoms themselves are (we’ll get to that in a minute). CP is a form of brain damage. The damage occurs either during or after birth, and is classified as a group of disorders because it can affect people in so many different ways. This is one of the disabilities that is most often referred to as “mild, moderate, or severe,” because degrees vary so much. A person with a gifted range IQ, who uses a wheelchair and has visual issues, could have CP. So could a person with impaired speech and cognition whose limbs are seemingly unaffected. So could a person who can walk and talk fine, but has a very difficult time using his or her hands.

According to cerebralpalsy.org, CP is the most common of all childhood disabilities, affecting 3 out of every 1000 births in the United States (although I don’t know why they call it a childhood disability because it’s not like you grow out of it. I guess they mean, “disability you are born with,” but that doesn’t make much sense either). Ahem.

Diagnosis usually occurs in babyhood, with between 8000 and 10,000 babies receiving a CP diagnosis each year. However, sometimes CP isn’t diagnosed until a child is preschool-age. I myself was diagnosed at two. This often happens because again, CP presents so differently for every person, and because sometimes symptoms masquerade as other things. For example, I was a very stiff baby, which is what tipped off my parents and doctor at first. But another stiff baby might have another disability. She might have a muscular disease, or she might just be reacting to something in her environment.

Are there classical features?

No; you cannot tell CP is present by looking at someone. However, there are different types of CP, and these classifications can help you determine what this person might need from you. For example, I have what’s called spastic CP. Despite the connotation of the word “spastic,” this actually means I’m stiff, not that my limbs are hard to control. I have been disparagingly called “stiff as a board.” When I’m a humorous mood, I sometimes call myself the Tin Lady (as in, Wizard of Oz).

Athetoid CP means the muscle tone is actually decreased; this is where you’ll see an infant who seems like a “floppy baby,” or a child or adult who has trouble controlling his or her muscles. I have seen people with athetoid CP whose limbs move on their own accord, or who have trouble doing things like holding up their heads. Again however, degree is everything, as it is with spastic CP.

Finally, there is ataxic CP. This is the form that most often impacts vision, balance, and posture. For example, you guys might remember me talking about my lack of depth perception and peripheral vision. This is due to ataxic CP. I know, “Wait a minute, I thought you said you had the spastic kind.” I do, but I also have ataxic. You can have a mixed type of CP, and one type may affect you more than the other. I have never met or heard of anyone who fits all three categories but I’m sure it has happened or will happen.

Finally, cerebral palsy can affect just one limb or any group of limbs. Some people have demiplegia, triplegia, or quadriplegia (two, three, or four limbs involved). Others have pentaplegia, which doctors classify as involving all four limbs plus head and neck. Other people with CP experience involvement of just one limb, and still others have forms of hemiplegia, where one side is affected more than the other. I’m hemiplegic; my right side is my stronger side.

CP is categorized much further than this on sites like cerebralpalsy.org, but in order to avoid information overload, those are just the basics.

Are there other medical issues?

It totally depends on the person. CP does not automatically mean increased potential for sickness or a decreased life expectancy. It can, but that is highly dependent on the severity of the CP and how the individual lives and functions otherwise. In other words, if you never exercise your muscles will begin to atrophy and you will experience pain whether you have CP or not. However, some people do have health issues tied directly to CP, such as muscle and nerve pain, visual issues, etc. These need medications, glasses, surgeries, and therapy to be treated effectively.

Can CP be “made better?”

As with most disabilities, there is no cure for CP. There are effective treatments like therapy, but as we’ve discussed, these are not cures and should not be overdone. As my father says, therapy is like fixing a dent on a car’s hood when what you really need is a new motor–but you just have to work with the motor you’ve got. My advice to parents and other loved ones of those with CP is, discuss your options and push for schools, workplaces, etc. to do their jobs in providing modifications the law says they must. But do not focus your entire life on, “If we do this therapy, Karen *will* walk someday” or “If we use this medication, Nabeel will stop having tremors and be able to feed and groom himself.” Maybe so, but maybe not. And if not, that is okay!

With all disabilities but, I have found, especially CP, you have to know what your options are and what the person in your life truly needs. I say this because I’ve been offered a lot of modifications and treatments I really didn’t need, so my parents had to be smart about what to take and what to leave. Later, I had to take over that responsibility. Again, this is true for any disability. The reason I bring it up with CP is because not only are no two cases alike, but I’d venture to say you will never, ever find two people with the exact same symptoms. If you put me next to another person with CP you might think, “Wow, their versions don’t match AT ALL.” There are often similarities, but…well, you get it.

What does a person with CP’s future look like?

Again, depends entirely on the person–and the support he or she is given. Independent living, marriage, children…all those are possible, but different supports may be needed. For instance, I want children but am aware that I will probably struggle with the motor skills and physical stamina needed to care for an infant or toddler. Calling all family and friends! As with most disabilities, group homes, assisted living, etc. are options, not the catch-all solution. Many people with CP, including a former colleague of mine, are now able to have caregivers and other aides come into or even live in their homes.

Myths and Facts:

Myth: All people with CP have cognitive/mental disabilities.

Truth: No. Some do (about 50%, last I checked), but these vary greatly just as physical symptoms do. People with CP can get inclusive educations, learn the things their peers do, go to university, or not. As a commenter on this blog once mentioned, we don’t act like it’s the end of the world if a TAB person doesn’t go to college; why is it such a big deal when a person with a disability doesn’t?

Myth: People with CP cannot get around their communities.

Truth: This myth only exists if you let it. People who let it, such as certain business owners, often say, “Well, it costs money to put in an automatic door/an accessible shower in our hotel rooms/whatever.” Well maybe, but what’s more cost effective and beneficial? Having everybody interact in your community, or locking out a whole population?

Myth: CP is a choice; people who claim to have it are just lazy.

Truth: You’d think nobody would be dumb and bigoted enough to say this, but I’ve heard it. It’s kind of an occupational hazard, and I’d venture to say people with other disabilities have heard it, too. This is more than a myth; it’s a dirty lie and it hurts everyone. Crush it.

Myth: My kid will outgrow CP.

Truth: This is actually a more common one than I originally thought, because some people believe that with the right therapies and supports, CP will largely “go away.” Not true; see above. As with every disability, CP doesn’t cease to exist because you turn 13, 18, or 21. In fact, adulthood is when PWDs may need your support–not your therapy, not your meds, but your love and belief–more than ever because some people still erroneously believe all people with disabilities are kids.

Myth: CP is a burden; I cannot provide for my loved one.

Truth: I hear this more with CP than with other disabilities, although no disability is exempt. Financial issues are real and present, and the lack of services can be frustrating or demoralizing if that’s something you run into. I know–I’ve lived it. But that’s why people with CP, and their loved ones, are here. We’re here to live our lives first and foremost, doing what we can do to make the world better like anybody else. But part of making the world better is speaking up and saying, “Some people need help to reach their full potential; let’s provide it instead of acting like help is bad.”

Come back next week for another lesson, readers! 🙂

 

Advertisements

2 thoughts on “Disability 101 Part 2: Cerebral Palsy

  1. Thank you Chick!

    I’ve noticed that a lot of service organisations and missions operate for CP.

    [This may vary depending on what part of the world you’re in].

    ISAAC just had their conference and Scope Communication Access was a big part of it.

    If you have CP and are perceived to have a cognitive/mental disability which lessens your intelligence and standing in the eyes of the world you are treated very badly.

    Your father was right about the metaphor he used. It worked for him and for you.

    “Congenital” is the one they should say. Or if it was in the Diagnostic and Statistical Manual it would be under “Disorders first evident in childhood, adolescence and infancy”. Or a lot of old-fashioned people would call it a “defect”.

    So the SYMPTOMS are purely physical and even then it’s not that simple.

    A person with a gifted range IQ, who uses a wheelchair and has visual issues, could have CP. So could a person with impaired speech and cognition whose limbs are seemingly unaffected. So could a person who can walk and talk fine, but has a very difficult time using his or her hands.

    So these are our 3 in 1000.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s