Hi :)
First let me introduce myself,
Hi I'm Julie, I'm 24 and it's been one minute since I last ticced.
I thought I'd start a blog for two reasons, one to keep friends and family updated on how everything is going along, and two to try and educate anyone who comes along about what life is like living with Tourette's Syndrome.
You know, that disability you see in movies and on TV where people swear all the time, that's what happens yes? Or maybe not. For me at least that's not how it works. Did you know that the swearing tic has a name? It's called Coprolalia and according to Wikipedia (the place for all things true and reliable) only 10% of people with Tourette's have it. And you know what, if you have it then that's perfectly fine, it's not like saying that people with Tourette's who don't have Coprolalia are perfectly fine acceptable members of the community (which we are) and people who do aren't. That's just silly. I just want to show people that that's not all that Tourette's is about.
I'd like to not have people ask me "But hang on, you don't swear. Or do you just stop yourself from swearing at work and do it when you get home?" (and actual question I've been asked many times) and if I can do something towards that then great.
Would you like to hear my story? About how it all started, the long road to a diagnosis, what life looks like at the moment and what it may look like for the future?
..........................
For me the earliest I can remember ticcing would be around 10 years old, if I was overtired I would get this shaking feeling in my chest, kind of like when you're super cold, when your chest and shoulders start shaking and you can't stop them.
That's what it felt like, just without the cold feeling.
I was 10, and figured that was just what happened when you got too tired, didn't think to mention it to my parents and just dealt with it.
When I was about 16/17 my dad noticed me twitching and jerking my arms and shoulders and demanded that I see a doctor. My GP referred me to a neurologist who turned out to be an arrogant old man, he figured he knew what was wrong with me, ordered some tested (MRI and an EEG) but told us I had myoclonic jerks. A myoclonic jerk is the same jerk you might occasionally get while falling asleep. It's also a symptom of something and not a diagnosis in itself, not that we would know this for another few years.
The tests came back in support of the neurologist's thoughts and I spent the next 6 years drugged up to the eyeballs with anti-epileptic meds that would keep me dizzy, dumb, and with no appetite.
Late last year I'd gotten to the point where nothing that I took was helping, and my 'jerks' were just getting continuously worse, I now made noises occasionally, had repetitive movements instead of just shock-like jerks, and decided it was time for a new neurologist who would actually listen. So it was off to my GP again for a new referral to a new neurologist who in our first appointment looked at my old scans, looked at me, did some thorough movement and reflex tests with me and told me that yes I had myoclonic jerks but no that wasn't all there was to it.
Over the next 6 months we tried a few different medications, none of which worked, before that neurologist frankly told me that he didn't know what was wrong with me, but would refer me to a movement specialist who would be able to find out. I really respect him for saying that, because there's no point keeping someone going all for the sake of not losing face.
On June 7th 2014 I tripped into the city for my movement specialist appointment, I didn't realise how big a difference that appointment would make to me. The specialist asked me many a questions, did a few movement tests and went on to diagnose me with Tourette's Syndrome, Sensory Processing Disorder, Anxiety and obsessive tendencies.
Having a correct diagnosis has made life all the more better for me, for one thing it means that I am now on the right medications, and I can research and find support groups that are right for me.
However having a diagnosis hasn't made life breezy, at the moment I am off work because after years of bullying from my boss, my Tourette's has fed off my anxiety and has progressed to the point of me having longer and longer 'ticcing seizures'. Think of all the tics you can imagine (I have around 20 different regular tics but any movement or sound can quickly become one) now imagine if all of these tics, plus some extra writhing and twisting movements, coming all at once. That's a ticcing seizure. When I have one I can't talk or walk but I can think, it's not an epileptic seizure because cognitively I'm still there.
They used to last around 5 minutes, just the other day I had one that lasted an hour and a half. These leave me feeling full of static electricity and exhausted all at the same time, figure that out.
..........................
So that's me, trying to figure out how to plan for the next 10 years of my life. Will my Tourette's calm down? Will it keep getting worse? Will I end up using a wheelchair? Or needing Deep Brain Stimulation?
Stay tuned to learn about what I do to cope, products I use and tactics I'm learning to make the days pass easier.
Much love, Julie x
No comments:
Post a Comment