My Life As A Hostage

I have memories of my Tourette's tics as far back as second or third grade. Back then, I wasn't diagnosed as having Tourette's. I was "disruptive". I was "hyperactive", "easily distracted" or I was someone who "doesn't pay attention in class". I got in trouble more times than I can count for interrupting class or not paying attention in church, and my ass saw it's share of beatings.

It wasn't until August of 2006, that I started to display tics that made me think something was wrong with me. When I had certain memories come up, or when I was especially stressed, my entire upper body would start to jolt violently. The frequency of these tics increased last Spring to the point where I was having hundreds of tics per day.

I was finally diagnosed as having Tourette's Syndrome on June 25th, 2009, at the age of 34. I was thrilled to finally have a diagnosis and a name to what I had been experiencing. I knew that this was something I wasn't going to die from, and, with medication, I could expect a fairly quick recovery. I couldn't have been further from the truth....

What I didn't know was that my brain was like a leaking dam. By trying to plug one hole, I had caused two more cracks to appear. My upper body jolts were starting to stop, but new tics were starting. These were tics that even my neurologist (a former head at Barrow Neurological Institute) had never seen.

I had developed an accent tic. Mid-sentence I will change accents, often to Northern Irish. I even will incorporate local slang and curse words. Then, as suddenly as it appeared, it will disappear...often mid-sentence. Stranger still, another accent that I have picked up is Matthew McConaughey. That one really annoys the wife.

I have also developed a migraine tic. Theoretically, I shouldn't be getting migraines since one of my Tourette's medications is also a drug to prevent migraines. I now have a migraine of some grade pretty much 24/7. The worse my migraine gets, the less I have any other tics; the migraine completely takes over my brain. The migraine will eventually get so painful that no medication will alleviate it and I have to go to the ER.

I have developed more common, and more frustrating Tourette's tics, like having to repeat a word over and over until it sounds right to me, or (a new one for me) the need to touch the top of my head over and over. I still have my upper body jolt, except now it is accompanied with a bark.

I entitled this post, "My Life as a Hostage", because that is exactly what it feels like to me. I foolishly felt like I was getting better over the last week or so. I went grocery shopping today and when I came home I started ticking again. I realized the reason I was feeling better is because I haven't left the house in ten days. My wife said something to me and I said "OK". Then, I yelled back "OK" more than a dozen times for the next two minutes as I walked to the dining room and sat down at the table. A voice in my head was telling me "Shut up. Stop it", while another voice was saying "He can't". It was like I was being held hostage. When I have to keep tapping the top of my head, it is usually while I am driving (I know...scary). It is entirely beyond my control. I'm steering with my knees and thinking about a bully in grade school, taking control of my arms, saying, "Why are you hitting yourself"? The worst one is the accent. It's like being a ventriloquist dummy. The worst part is, you never know when it's going to come.

For those of you without Tourette's, I can only describe it as if someone has stolen the remote that controls your body, and occasionally, just for kicks, makes you do things you don't want to.

I want my remote back.

Quick Update

I called my Neurologist and described all the problems I have been having(Alzheimer's like symptoms, talking in accents, stuttering). They moved up my appointment from November 13th to tomorrow at 11am. I will keep you posted.

The Only Word That Comes To Mind Is "De-Evolution"

It appears that over the last 6-9 months, my brain has taken a rapid deterioration compared to how I used to function. It's almost as if I have taken a step 30 years backward, or 40 years forward.

I get lost in the grocery store. I forget my wife's and daughter's names sometimes. As I have stated in previous blog postings(see 10/10/09), I have trouble associating words with objects or places. It's almost as if I have Alzheimer's at the age of 34. I don't know if that is normal for people with PTSD, but it is frustrating as all hell.

I'm not trying to toot my own horn, but I used to be a genius. My communication skills and multitasking abilities were second to none. I can't even put mayo on a ham sandwich now. If I'm rinsing a dish in the sink, and my wife asks me a question, I have to put down the dish, and turn off the water to answer the question. Then it usually takes between two to three minutes for me to remember what I was doing before the question was asked. Yesterday, I was on a website, and the site was telling me to hit a button that said "OK" to continue. My wife and daughter were in the room, making noise in the background. I read the instructions on the computer close to twenty times before asking my wife and daughter to leave the room so I could concentrate on what I was doing. All I had to do was click "OK", and I had to have complete silence in the room so I could read the instructions for the twenty first time.

Without my wife reminding me, most days, I forget to eat. I forget to shower, to shave, to take my pills, to even drink water sometimes. Many days, when I do attempt to make a meal, I am so indecisive, my wife practically has to tell me what to eat. I don't know what I'm hungry for. In fact, I don't even realize what I am feeling is hunger.

And, to top it all off, my brain has turned me into a ventriloquist's dummy. Remember my previous post where I spontaneously started talking like Matthew McConaughey? (see 09/21/09) Well, it's still happening. Not too frequently, but ol' Matt has company. I now am speaking in an authentic Northern Irish accent on a regular basis, for extended periods of time. This is happening unannounced, and out of my control. I'm even using phrases like "da'" instead of dad. It sounds so genuine, you would think I was in the IRA. I have no idea how, or why, this is happening. And, just as soon as it starts, it stops.

My only fear is that what has started will not be able to reverse itself, but only get worse. This song seems to fit right now. I have to keep telling myself "I'm just a little unwell....."

Antiques, Matthew McConaughey, and the Find of the Century

Wow....it's been one hell of a weekend.....let me tell you....

In fact, from this point forward, I'm not using punctuation. It has been that bad. Try to follow.

saturday jessi had a spinning class....spinning as in yarn...not as in cycling...so we went down to downtown mesa to a yarn and fiber store by ourselves and had mom and dad babysit the little one for the day. that was nice. while she was spinning...i thought i would stroll down main street and check out some of the shops since ive never been down main street before...very impressed.... the had a couple of really nice antique shops. one was enormous.....it was two levels...had to have had 2-300 vendors in there....found some old thomas edison phonograph plates that were a hundred years old or more....they were only selling for $6 a piece....probably since they couldnt be played and were practically useless...found a 45 of john lennons imagine on the capitol record label...vendor had it for sale for $2.99....flawless condition....knew it was rare because not too many were released on that label....they were mostly released on apple...looked it up online and it turns out its worth about $35...not bad

also found a really nice scrapbooking store....had some cool stuff that gave me a lot of good ideas....ive been coming up with some great ideas lately for some projects....some art pieces....jewelery....crafts....and found some things at that store that would work really well into some of the things im working on.....

so jessis class was finished and we decided to head up to bookmans to try to trade some of my xbox stuff.....sick and tired of trying to sell it on craigslist.....thats a story for another blog.....found a HIM lp in pink vinyl for $10....great deal....also found john and yoko double fantasy and the 12" vinyl of princes raspberry beret.....good day for me so far.....but thats when it started to get weird.....

we go around the corner to grab lunch....suddenly....with no warning...no provocation.....i start talking like matthew mcconaughey....like im channeling his voice or something....its strange but i think its sort of funny at first....i start saying things like "alright alright alright" and "i think now might be a good time for me to take my shirt off".....but after about a minute and a half....it starts to get really annoying....my wife thinks im fucking around....shes getting pissed off....im trying to stop...but i cant......its completely involuntary.....THIS WENT ON FOR MORE THAN TWENTY FUCKING MINUTES....im ordering my food as matthew mcconaughey.....im asking for a refill on my mountain dew as MATTHEW FUCKING MCCONAUGHEY.....i stopped talking....completely....my only form of communication for the next half hour was charades....i opened my mouth again 30 minutes later and he had left my brain and i was back....it was the most bizarre thing i had ever experienced....

next door to the restaurant we were at was a goodwill store....the sign on the window gave us the impression that it was 50% off that day so we walked in to see what was available....jessi went straight to the mens sweaters to see if there were any that the wool or cotton could be salvaged from....i went directly to the vinyl. i have some art projects in the works that involve old records and im always curious to see what these stores have. the bottom shelf of the rack caught my eye. there was a kiss album in japanese. i thought that was cool...but since i was never a kiss fan i set it aside. underneath the kiss album was led zeppelin 4....one of my favorites..since it had stairway to heaven....already have a copy of it but i could always use another for my project so i set it in a pile beside me. beneath that was the beatles....let it be. i nearly pissed myself. finding a vinyl copy of a beatles album in a store.....in a goodwill no less....was like getting video of bigfoot. my heart started to race.....i started going through the stack. meet the beatles.....sgt peppers....abby road...let it be.....the beatles second album....the beatles rarities....rubber soul...altogether.....10 beatles albums and 8 led zeppelin albums...all in mint condition...as if they had never been played....

i sat down on a couch in the furniture section just to pull each album out from the jacket to make sure the correct album was in there and it wasnt a con or a mistake....i was almost crying with excitement....i had a half dozen people come by to ask me if i had found those records in that store....it was at that time that jessi told me to hell with checking things.....put them in the cart and lets get out of there before someone tries to take them from us....most of the records were $2.99 or $3.99 each....but i paid as little as 99 cents for a couple of them....unbelievable.....

went to a diamondbacks game yesterday....it was fun to take the baby....but very trying on my nerves....way too much noise....my tourettes seems to be doing a lot better....still having a few series of ticks a day but not a serious as they once were. my doctor originally had me on 25 mg of topamax twice a day...now im at 125/100/100 a day....and still not tick free.....i am stuttering like crazy....like porky pig sometimes.....where i just have to use an alternate word to finish the sentence....my conversations with my wife now involve a lot of charades...so im still really fucked up...but im trying....im trying