What is Cerebral Palsy? (Pt. 2)

ce•re•bral / of the brain
pal•sy / lack of muscle control

Cerebral palsy (CP) is an umbrella term that refers to a group of disorders affecting a person’s ability to move. It is a permanent life-long condition, but generally does not worsen over time. It is due to damage to the developing brain either during pregnancy or shortly after birth.

CP affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. People who have cerebral palsy may also have visual, learning, hearing, speech, epilepsy and intellectual impairments.

Worldwide, the incidence of cerebral palsy is 1 in 500 births. There are currently 17 million people in the world who live with CP.

Ranting About Piano

I’ve always wanted to play piano, and it’s the most frustrating thing in the world to me that I can’t. Every time I’ve tried to play even the simplest ditty, I’ve ended up crying. It has gotten to the point before where I’ve played on Smule Magic Piano for hours on end because I just wanted to make piano-like music. (A note on Smule Magic Piano- it’s really relaxing and you can play some songs with one finger so it’s really great if you want to make music but have no music experience.) Because I’m stubborn and obstinate and I will never take “no” for an answer, last night I asked my friend to show me how to play piano. He said, “Okay, let’s start with the simplest song I know.” So he had me play chords with my left hand- which was pretty okay for a first-time piano player- but then he had me play the melody with my right hand. I couldn’t even make my fingers press down hard enough to make a sound, let alone play a chord or keep any rhythm at all. I know that I can’t do it, but every single time it’s like being hit full I n the face with another failure. Seeing that I was getting pretty upset, my friend suggested, “Let’s play a duet out of “Heart and Soul!” I’ll play the left hand chords and you can play the melody with either hand.” Now if you’ve ever heard “Heart and Soul,” (or played it on the piano- I think it’s really popular on Smule Magic Piano too) you’ll know this song’s melody is pretty easy to play. After a couple practice runs, I could tap it out with a finger on my right hand. I wasn’t perfect by any means, but I could play piano and it was the best feeling in the world.

Horn

I’ve played an instrument since 4th grade. I first started with trumpet, because it’s “easy to pick up and fun to play.” But because of my hand, I had to play it left-handed- this both kind of hurt (because a trumpet isn’t made for my wrong hand’s smushed fingers against the valve) and seriously pissed off my bad conductor in middle school. 4th and 5th grade were fine- my parents explained everything to my teacher and she was really nice about it and never brought it up.

But when I entered middle school, the new band conductor was a trumpet enthusiast, and as a sixth grader I couldn’t understand why someone cared so much about the trumpet section’s “posture and poise,” as my conductor put it. On the first day, I could see a little question mark forming in his mind- “MY instrument? With a LEFT hand?”

And so it happened that on a random day in the middle of October he called me into his office after class and asked, “Why do you play your trumpet left-handed? It’s meant to be played right-handed, you know.” And so I responded with the typical “oh I’m left-handed and it’s easier” because I 1) didn’t want to tell some random 50-year-old smelly man about my hemiparesis (I didn’t even know it was called that at the time) nor did I 2) want my parents getting involved again. So my conductor very kindly suggested that I “learn to play the trumpet right or I should perhaps switch to some other form of artistic expression.” I half-agreed and ran out of the class. I don’t blame him, I was just kind of shy and scared and I really didn’t know how to deal with explaining my hand to people yet. But I still really liked music.

So that night I went home and Googled “left hand instrument.” Really the only search hit on Yahoo Answers was “French horn,” always with the caption “very hard to learn not for beginners,” which explains why it wasn’t really offered to a 6th grader. But the amazing thing about horn is that you play it almost entirely with your left hand on the valves. You put your right hand in the bell to hold it up, but it doesn’t do much else. I thought it was perfect. So naturally I found YouTube videos of a lady playing “Siegfried’s Horn Call” and I thought it sounded better and bigger and just cooler than any trumpet that I’d ever heard.

I ran into my parents’ room and blabbed, “Iwannaplayfrenchhorninsteadoftrumpetit’ssocool!” And the next day I walked into band class and told my conductor, “I’m gonna play horn not trumpet so I can use my left hand.” Of course, he enthusiastically agreed and gave me one of the dinged-up school horns because french horn players are a “rare commodity”- it’s hard to play so no one gets good at it.

And I was absolutely horrible at first, but I loved it. Even though I started out on horn sounding like some poor dying animal’s last breath, I practiced nearly every day because I wanted to sound like the lady in the “Siegfried’s Horn Call” YouTube video I’d heard.

By the end of the year, I had solos in my band’s final concert, and my conductor asked me to play with the 8th graders as a 7th grader. When I entered high school, I auditioned and made it in to my school’s most compatible band, Wind Ensemble. Sophomore year, I quit school band and joined a competitive outside orchestra. I also learned “Siegfried’s Horn Call”- it’s still my favorite. This year, I’m super excited to be the principal horn for my orchestra.

The takeaway from this is that even thought you might not be able to do some things, like play trumpet, or people might get you down, it’s most important to follow what you’re interested in- find a way to do that and to fully participate. Because if you don’t love it, it’s not worth doing. And you’ll take so much more away from the experience if it’s something you can always try your hardest at. Don’t give up, and play the french horn!

My Bedtime Routine

I have a therapy routine I do that helps me relax my hand better before I go to sleep. First, I massage my hand for about 5 minutes, then I do kneeling forearm stretches, shoulder stretches, and triceps stretches for about 3 minutes each. Finally, I do as many push-ups as I can before my arm gets tired- I’ve been doing this exercise for about a year and I can do twenty push-ups. Don’t worry if it’s hard at first, I could barely do one push-up when I first started. Try doing “girly push-ups” to build up your muscle strength. Push-ups are my favorite exercise to stretch out my arm and hand because they stretch the palm of my hand and forearm, the two areas that are the tightest for me after a long day. They also build up arm strength, which is good for both symmetry and comfort. After these exercises, I put my arm brace on and go to sleep!

Therapy Tip #1

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When I was little, my mom found a fun way to build up my muscle strength and control in my right forearm. She would place a temporary tattoo on the inside of my wrist, and I’d always flip my wrist over to get a look at my new pretty tattoo. After a couple of years of this therapy, I can flip my forearm over (so that the palm of my hand is facing up or down when my forearm is at a 90 degree angle with my body) really easily and quickly- it worked perfectly for me! This is an awesome therapy trick to try.

What is Cerebral Palsy? (Pt. 1)

I found this infographic- I think it explains the basics of CP very well and gives some very interesting statistics. I, personally, didn’t know that CP is the most common physical disability in childhood; it’s good to know that you’re never going through your struggles alone.

Who Am I?

Welcome to my blog! My name is Cara, and I’m a 16-year-old girl living in California. I was born with cerebral palsy- spastic hemiparesis, to be more exact- but it doesn’t define who I am. My hobbies include reading, playing the french horn, golfing, and spending time with my friends. Most of my friends don’t even know that I was born with CP, but I am lucky that those who do have always supported me. On this blog, I’ll be posting therapy tips, life advice, inspirational quotes, and anything else I find helpful for becoming a better person. I hope you enjoy your time here!