My Tourette's History, Part II

So let's catch up. Last time you read, I had just gone to the emergency room for the first time. They gave me a CAT scan and some other tests, all of which all ended up negative. At this stage in the game, all of my twitches were of a purely physical nature - no vocal tics at all. So let's continue...

I went to quite a few neurologists and hospitals over the next few months. I was seen by pediatric neurologists in my hometown hospital of Mission Hospital and at Emory Hospital in Atlanta, Georgia. Not only did the doctors give me various unsatisfactory diagnoses, but they also gave different definitions of "Tourette Syndrome" and why I did not have it. Due to the irregularity of my case and my very persistent mother, I was able to be seen at the National Institute of Neurological Disorders and Stroke (NINDS) , part of the National Institutes of Health (NIH) in Bethesda, Maryland.

Just as an explanation of how cool that is, NIH only sees patients that were unable to be diagnosed or helped by other doctors around the country. They also do not provide treatment, except as part of an experiment. This way, they can focus on furthering the boundaries of medicine and not on routine procedures. I had the top 20ish neurologists in the country (plus a few interns) all focusing and talking about me and my condition. They took a video of my tics, and asked me and my family various questions about how the tics felt, when they started, and so on. By the time they came around to giving their diagnosis, the doctor assigned to talking to my family one on one (Dr. Ejaz Shamim) informed us that I had a tic disorder. "Okay, that sounds about right. Which one?" we asked. Apparently that was it... just a generic tic disorder with no real background, no character. They said that most likely the virus I had prior to developing the twitches managed to travel to my brain and mess up some wiring, causing me to have intermittent involuntary 'tics.' I did not quite have enough symptoms to be labeled as "Tourette Syndrome," but I was close.

It sucked for those few weeks that I all I knew was that I had a "tic disorder." People would ask why I was twitching and all I could tell them is basically what they could already see for themselves. The smart ones would ask "do you have Tourette's?" I would tell them no, but almost. It was difficult because I felt somewhat trapped by this incurable, undiagnosable thing that may or may not go away in time.

I remember the day (August 12, 2007) when we got the call from the doctor's office. My mother was driving me to take my driving test for my driver's liscence at the DMV. Apparently the doctors at NIH were so fascinated with my case that they consulted even more doctors and had finally decided that I did, in fact, have Tourette Syndrome. I was so relieved!! I felt like I had finally landed after falling for a very long time. People often ask me "were you sad when you found out you had Tourette's?" almost as if I hadn't noticed. "No way!" I tell them. "I'd never felt better!"

I performed marvelously on the driving test and got my lisence on the first try. As the final part of the drivers license routine, the DMV lady behind the counter asked "do you experience tremors, uncontrollable movements, blackouts..." She continued with a long list of medical issues that could perhaps impair one's driving abilities, but she had already said the important things first. My heart sank with tentative disappointment as I responded nervously with "um... I have Tourette's."

"Okay," she said with a questioning look. All that she asked was: "how do you spell that?"

(To be continued)

My Tourette's History, Part I

So let me tell you the background story.

Most children tend to develop Tourette Syndrome gradually in early life; could be anywhere around 3-10 years old, give or take. I, however, developed it suddenly at the age of sixteen. I remember the day pretty well; it was March 16, 2007, and I had just gotten over the flu that had been going around the school just a week before. I came back to Mr. Ross's third period pre-Calculus class after lunch this particular Friday, and and when I sat down and laid my hands on the desk, my right hand seemed to swat an imaginary fly, as if it had a mind of it's own. I remember staring at my hand, wondering how to react: "What just happened? Did anyone else see that? Why did that happen?" After sifting through various questions, my mind settled on one that best fit the scenario: "Did I do that on purpose?"

Throughout the rest of class, similar twitches kept appearing in unpredictable places. My feet would kick and my hands would swat at nothing in particular; even my nose wrinkled up a few times. I remember experimenting with them, trying to see how much they were caused by voluntary thoughts or some involuntary force. It seems that the line between the voluntary and the involuntary is not so clearly defined...

When I went to 4th period Music Theory, I decided it was time to say something to somebody. We had a test that day... I was going to try to take it, but my knees wouldn't stop awkwardly wobbling together and my back kept jerking straight up. Don't forget, these are large movements we're talking about here. My back was jerking so hard I had to stop writing each time it happened! Mr. Talley (a wonderful guy and band director) drove me the short distance to my mom's classroom (she taught Chemistry at my high school).

My mom is funny, always finishing "that last e-mail" for a rediculously long time. I remember walking into her classroom and saying "Mom, I'm twitching I think I may need to go to the doctor."
"Mkay Bunchie, let me finish this email," she replied without looking up from her computer.
"Okay, Mom."
(pause)
"Mike, will stop tapping your foot?"
"No Mom, that's the problem."
I remember the look of shock on her face when she realize the weight of the situation. She immediately shut down her computer and rushed me to the Emergency Room.

(To be continued)

Awesome Recording Studio

Ben and I in the recording studio

So my aunt and cousin came along with my mom to visit me this week . My aunt (Jean) and cousin (Ben) are from Cincinnati, OH so it was really awesome that they came. Ben is 15 years old and he and I are good buds. So anyways, our moms rented out this guest house type thing near Jordan lake.

Me doing my best to keep a pitch and remember the words!

Little did they know at the time that the guest house that they rented was half-house half-recording studio! After we talked to the guy who owned the place and he found out we were both musicians, he left the studio unlocked for us to play around with whenever we want. It was stocked with a full drumset, a grand piano, a double-keyboard set up, a Fender Stratocaster and a few mics. Ben sat down at the drums and I grabbed the Strat and we had a rockin good time. We played things like Hotel California and Mad World as well as random stuff we made up on the spot. We didn't actually record anything, we just played the instruments and had a good time.

Ben rockin' out on the drums

Work today

Work was quite tiring today. We were putting linens in all of the rooms of Craige North (UNC dorm); pillows, towels, blankets, pillowcases, sheets, and fitted sheets. What was scheduled to be a three hour task ended up being about a seven and a half hour task... quite tiring and frustrating. On the bright side, today's excursions will give my paycheck a considerable boost. I'll skip the story of everything that happened and skip straight to the moral: Think things through before you say things - talking shit won't get anybody anywhere if it really is shit.

Today's work was significant because it was my first day with vocal tics after a considerable length of silence. I have physical tics all the time, but the vocal tics are much rarer for me. I think it was probably the mental and physical stress of the job that brought it back up. I feel a bit silly saying that because the job wasn't particularly stressful, but it was just enough to jump start the tics again. They stopped pretty soon after I got off the clock, but who knows if and when they'll start back up again. I'm going to take a nap!!

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Hello!

This post marks my first attempt at bloggage. If you're reading this I guess that means you're at least a little bit interested in me; therefore, I'll tell you a bit about who I am!

My name is Michael and at the time that I'm writing this I'm waiting to begin my sophomore year at UNC Chapel Hill. My mind and body are filled with a passion for music, butI am majoring psychology with a minor in music.

In my junior year of high school I randomly developed Tourette Syndrome (I'll talk more about that in later posts). After developing this, I went to UNC to study chemistry and then go on to med school and become a neurologist specializing in Tourette Syndrome (TS). This plan promptly changed upon my first chemistry class! I reevaluated things and realized that my clinical psychologists had provided me with much more real help than the neurologists did. They tought me how to live and deal with my Tourette's in a way that the neurologists couldn't. Now that I've decided on clinical psychology, I find myself much more interested in the subject matter than I ever was in neurology.

So that's me! I'm sure I'll be blogging more as time goes on. Thanks for visiting!