Candid Perspectives: How Do You Cope? Life & the Questions of Living with a DisabilityBy Eric Vondran
I've never been much of a person to indulge in what some other people may call 'vices'. My world was plenty interesting without enhancing or muting the experience. Of course, that's changed now. For almost a year now, I've been smoking marijuana daily to help manage some of the symptoms related to my Tardive Dystonia. I had to be convinced to try it, though. My sober wife made her case and at the urging of some others, I finally gave it a shot. Let me back track a moment to describe the scene. There I was, barely thirty years old and my head and neck start to shake. My only relief was laying down flat, which for some reason stopped the shaking completely. If I got past about a 20 degree angle sitting up, the shaking would come back. I spent five weeks in the hospital while they poked, scanned and drugged me. As I'm sure you're aware (and may have experienced yourself), answers were not forthcoming. Nevertheless, I was released from the hospital, mainly because there was very little else they could do, having exhausted the supply of drugs that are normally used to treat movement disorders. Artane was the most effective, but made me stupid. Really stupid, like give me a bib and spoon type of stupid. It didn't stop the shaking, but it did slow it down a bit. I mean, the hospital food was okay but it really was time to go. I spent the remainder of the year, 2008, feeling trapped inside my own body. My mind was willing, but my body had other plans. On a really good day I could go out for a couple of hours, but then I'd be done for the day... and the next day. I knew this wasn't an ideal situation in which to find myself, but my choices were limited. I'd have to adapt. I watched a documentary* where a woman in the US, (oh, hi... I'm So, I arranged to try some.** Yes, “smoking up” did stop the stuttering & slurred speech, but as a surprise, it also stopped the shaking for a while. This, of course, led to more exploration as to the effectiveness of "smoking up" (or medicating, as I've come to call it). So far, the unmodified original dosage (less than .6mg / 1/8th TSP-- hey if you're going to take medicine, it's really good to know the dosage!) stops the shaking for about eighteen hours. I can function almost normally and due to the uniqueness of my particular Tardive Dystonia*** I don't usually get "stoned" in the process. Part of the high is caused by an induced dopamine release, but with really low levels of dopamine the rush is a lot less so the high is also a lot less. I knew that rolling joints would not be a good solution. That whole shaking business really makes fine motor control a mountain to climb that would impede its usefulness to me. So, I picked up a rather elegant and discreet pipe. I also felt compelled to tell my doctors. Now, because of the relative novelty of the situation, I thought it would be good to document the changes on video as evidence. And while my doctors trust me to some extent, video evidence is always handy. My General Practitioner (GP) wasn't keen on the idea. He just doesn't want me to experience any more downsides than necessary. Fair enough. But if it works, it works. My psychiatric team was first surprised. Then after a quick Google search, they discovered research to support my own findings: marijuana/ THC and the effectiveness on Parkinson's. This was good because Parkinson’s and Dystonia affect the same parts of the brain. The neurologists were also supportive, but wanted me to try a synthetic THC pill (Cesamet) to compare its effectiveness versus medicating. Yes, the pill was effective, but not as effective as smoking. Try 45 minutes vs. 18 hours of relief. I was well on track to being legal. Well, that's the goal at least, to legally grow and use marijuana for medical purposes. I'm currently ‘in the machine’ waiting to hear back from one of our chronic pain clinics to further that goal. Until then, I'll be a criminal. If I'm busted, I'll plead compassion from the courts. I am able to live a more active life due to this medication and I've found that "quality of life" has increased dramatically because of it. Once I'm legal, I'll try going back to work.
* I believe the documentary was 'In Pot We Trust'.
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