Sunday, March 17, 2013

Yadda yadda, incurable, yadda yadda ...

I have Parkinson's Disease. I've had it for nearly 20 years. For the first 15 or so it wasn't bad -- in fact, entire days would pass when I could almost forget I had it. But though individual days would pass unremarkably, individual weeks would not. Nor would months, or years. I was lucky enough to get in on the ground floor of a new surgical treatment: DBS (Deep Brain Stimulation). It's basically a pacemaker for the brain. It slowed the progress of the disease dramatically.

But it didn't stop it.

Because there's no cure.

That's because it's not a disease, as we currently define it; that is, it doesn't seem pathological in origin. A more suitable qualifier would be "Syndrome". But, though I'm uncertain of the terminology, I can describe what it's like. It's like being dipped in extremely slow-hardening cement. It's hard to get around much, unless I swallow a pharmacy's weight in pills every day. (Which aren't free, even with Medicare.) PD has also pretty much completely destroyed my ability to speak coherently. I can communicate sometimes, although most people aren't fluent in Village Idiot. (In fact, people are usually more fluent in Klingon.) It's become nearly impossible to type anymore. I used to be able to type over 100 wpm; now I'm lucky if I can do ten.

I've had over 400 TV scripts produced, and a half dozen movies; I've had 2 dozen novels published and a codswallop or two of comic books, graphic novels, and short stories. I've won an Emmy and been nominated for several more awards, including a Hugo and a Nebula. Yet whenever I go out in public people watch me like they expect me to start flinging my filth like a bored primate at the City Zoo.

If I had to pick one thing that I'd like to have changed about this motherfucking disease (please excuse my language; I meant to say motherfucking syndrome), it's my inability to speak. It's the result of a confluence of factors; a sub-syndrome of the larger one. As such, it can be possibly addressed symptomatically, which is a fairly arduous "two-steps-forward-one-step-back" process, or I can try to find a wholly different paradigm to address it through.

Which I may have done; theoretically, at least. I'm not prepared to say anything further at the moment -- but fingers crossed.

2 comments:

Kane Fawe said...

Ever since I watched "The Cape and Cowl Conspiracy," you have been a favourite writer of mine and, since I found your blog, an inspiration. Your bravery and openness in the face of such a debilitating syndrome makes me want so much to write more, write better and write from the heart. Thank you and please, keep fighting.

Jedipadmay said...

Hi Michael; My husband has this problem as well and, while he is five or six years into PD, is is currently doing speech therapy to force his voice. It is pretty scary and we are hoping for research advancements to be able to deal with this. My thoughts are with you. I enjoy your SW books, and am a member of the 501st New England Garrison. Let's hope for some positive events in PD.
Terry
jedipadmay@yahoo.com