I posted last week on facebook that I was going to Seattle this past weekend. One of the joys of living with a neurological disability is that you get to go to doctors. Doctors upon doctors upon even more doctors. And when you live with a neurological disability like mine, you get to hear those lovely words, “I have nothing left to offer you.” Good fun, right?
You get used to it though, and after you’ve done as much research as I have, a doctor giving you any options you haven’t tried yet is a surprise. Hearing them tell you they have no other options however, is not a surprise. In the last six years I have been to four doctors specifically for my Tourette’s; the pediatric neurologist who diagnosed me, the psychiatrist they referred me to, the movement disorder specialist they referred me to, and the pediatric neurologist I sought out on my own this past year. Between those four doctors and my own internet research, I have tried seven different medications, acupuncture, a homeopathic remedy, and I receive chiropractic care. I also employ Comprehensive Behavioral Intervention for Tics (CBIT) techniques even though I have never seen anybody to learn CBIT; I taught myself.
Not a single medication or treatment has worked. The chiropractic care helps repair some of the damage from the tics and keeps my body moving in the way that it is supposed to, and the therapeutic massage I get occasionally at the chiropractor helps my muscles from tightening up to the point that my joints don’t want to move. The CBIT techniques I use help me recognize the tic “urges” before the tic happens and the skills I’ve learned over the last six years help me suppress the tics when I need to or transfer them to a more appropriate outlet (ie. swapping head banging for hand tremors; a lot less noticeable).
The neurologist in Seattle offered me a few experimental options to try. I declined them all. Due to my medical history and leeriness of medications in general, I chose not to take a new medication he offered me. The medication was just approved by the FDA in the last year, though it was used in Canada previously. To even get the medication, I would have to fill out forms and have it shipped from the supplier directly to my apartment. Then there were a lot of side effects. No thank you. He also offered to refer me to an adult movement disorder specialist in the same medical complex who may or may not have decided I would be a candidate for botox injections. From how he explained it however, I would most likely not be a candidate. The botox is completely experimental and it is used mostly for tics involving small, discrete muscle groups. Like a blinking tic. While I have tics involving those types of muscle groups, they don’t bother me that much. The ones that are more affective involve big muscle groups; my neck, my calves, my upper arms, etc. I struggle with how botox would work in such a large muscle area and from my understanding; the botox would only make it harder for your body to tic. It wouldn’t actually make the tic urge go away; and I know that sometimes wanting to tic and not being able to can be more painful than just ticcing.
The doctor also asked me if I wanted to try some of the medications I had taken previously; but since I had already been down those roads before with zero success, I opted not to. I was not surprised when this doctor told me that he was out of options to try. Thankfully, surgery still stays off the table due to the doctor’s observations, not my objections. It is still completely experimental although the neurologist did say that they know where to poke now, whereas before they pretty much went in blind and saw what happened.
Tourette Syndrome is funny; I would rather live with tics at the level I currently do for the rest of my life then have my tics fluctuate with good weeks/months and bad. When I have good periods of time, and I have had them, I lose all of the coping strategies and the techniques I had to suppress my tics for any length of time. My freshman year of college I was virtually tic free; nobody I met then knew I had Tourette’s unless I told them. About October of my sophomore year, my tics came back with a vengeance. I won’t ever really know why they came back, if there was a catalyst, or if it was just bad luck, but it was like being diagnosed all over again. I had no coping strategies because I hadn’t had to use them in a year. I had been able to live a whole year without being the center of attention and without the constant hyper-vigilance. It was during this time of relearning how to control my body that the coprolalia started. I would rather live every day of my life at hyper-vigilance and having to control my body, than grow lax during periods of not having to control my mind. It makes everyday life easier, and it makes it harder for people who know me during those down periods to pretend like I don’t tic or that it isn’t as severe as I claim it to be (it happens).
The neurologist this time also asked me the litany of depression/mood questions. Put yourself in my shoes; it would be quite easy to grow frustrated at your life and continual frustration could lead to mood disorders. At this point in living with my disability though, I have accepted it. It was a long long process; looking back at the last six years I recognize what I was going through as the grieving process. I hadn’t lost anybody, but I had lost my sense of self. The person who I had thought I would become was gone. But I like the person I became; I am tougher and stronger than I could have ever been before. Which is why I am not embarrassed by my disability. I am not embarrassed by something that is out of my control.
And now I have gone round and round, talking myself into a whole slew of tangents. The neurologist is swapping my migraine medication because I did not like the side effects and this is the first time in four years I have been off of it. The meds also helped me sleep, so I’ve spent the last few days struggling to fall asleep and waking up way too early. As a result, I’m struggling a bit to stay focused and on topic. Clearly.
In completely unrelated news, I’m flying down to California Thursday for the fundraising dinner this weekend and I’m really excited! I (finally) finished the afghan I’m going to raffle off which means that my work for the event is done. Thanks to everybody who has RSVP’d or is donating their time or something for the event!