"Keyboard, tree, calendar, exit, theater!" ...or "How I Became A Lab Rat"

This past Tuesday, I had my "baseline 3 1/2 hour doctors appointment to ensure my overall level of health" before I embark on a 44-week double-blind medication study on the side effects of an already-FDA approved medication for one health issue which MAY (or may not) have benefits towards the treatment of Parkinson's Disease.

This is an unpaid, completely voluntary, fairly non-invasive study which is being conducted on about 300 Parkinson's patients nationally - all of whom are at about the same stage of progression as me.  The "fairly non-invasive" part is that you voluntarily give your entire medical history over to a team of doctors, researchers and hospital administrators (whom you may or may not have already met) who study your treatment for nearly a year.  If this were an invasive study, it would include medical procedures like spinal taps and such and, call me a wuss, but I already HAVE fuckin' Parkinson's, thankyouverymuch so keep your damn needles the hell away from my back.

(ASIDE:  God, please bless the people who voluntarily sign up for invasive studies.  Seriously.  I've watched someone getting a spinal tap and ... *shudder* ... I can't imagine being totally healthy and going through that kind of pain all in the name of Science.)

My mostly needle-free test consisted of questions about my health, and quizzes of cognition, short-term memory, balance, and an assessment of my current level of Parkinson's.  Oh, and a 40-page scratch and sniff test.

Yeah, that part was strangely frustrating.  "Here - sniff this."  "Ok, that's BBQ" (which triggered my head to think "wow - BBQ would be good for dinner").  Then it was "Now sniff this."  "THAT'S a dill pickle."  (Great, now I want a dill pickle.)  A few I really couldn't tell what the heck they were and so I'd see the choices of what it COULD be and then go from there.  These scents are all generated in a fake sort of way (meaning a disclaimer below the "banana" scratch area should read something like "no bananas were harmed in the course of creating this smell"), so the chocolate one smelled NOTHING like actual chocolate ... ... ... says the girl that can still taste the difference between Quik, Hershey's, and Guittard.  By the 27th scratch, my fingers smelled like they'd walked through a Las Vegas buffet - and not in a yummy kind of a way.

The researchers took a blood sample (using an extremely thin needle - honestly I didn't feel it at all), a urine sample, and swabbed my mouth - all to get DNA samples to test for any markers of Parkinson's.  If they can get enough samples, I guess, they'll be able to find the specific link in the strand and ... I dunno ... alter or remove it for future generations?  Anyway, they've got all my "stuff" now ... hey - maybe they can use it to make a new and improved version - Me, 2.0!

The pills I'm taking for the next two weeks are either three capsules of nothing at all, or two capsules of nothing and one with 15mg of the medication being tested.  After those two weeks are up, I'll turn in those bottles and get three new bottles - which will either be three capsules of nothing at all or two that each have 15mgs of medication and one that is just a "sugar pill".  After two weeks on that, I'll again turn everything in and get three new bottles, which will be all medication or all nothing.  This is done so that the body can adjust to the (possible) medication - vs. just tossing 45mg at ya' and saying "so, how do you feel?"

When I took my first dose (in front of the researchers, who then kept me under observation for 45 minutes), I felt like one pill MAY have weighed more than the other two ... but that could absolutely be my mind playing tricks with me, which IS part of a double-blind study in the first place.  I was asked how I felt about every five minutes and, after the 3rd time, started coming up with different responses:  "I haven't sprouted a tail yet" to "Don't seem to be frothing at the mouth" to "Well I don't FEEL invisible yet".  While this may read like I was bothered by the near constant checking in, I was honestly glad that my health was in their hands.

Anyway it's day four on the "possible" medication. No vivid dreams (like what I had when I was on Carbidopa-Levodopa - yikes ... really creepy stuff) and my arm tremor seems about the same - maybe it happens a LITTLE less often (but last week was super stressful at work so it could just be that).

I guess we'll see what the next 43 weeks are like. I note in my Parkinson's Daily Diary when I take my pills, when I eat, and I rate my shaking throughout the day, all of which I show to my doctors and keep it current for my own benefit so, over time, maybe I'll notice a change ... HOPEFULLY for the better.

OH - but one kinda funny thing happened during the course of my visit.

For the short-term memory portion of my tests, each doctor/assistant starts by saying 5 random words for me to remember until I'm asked to repeat them back.  So Doctor 1 says "rabbit, scissors, coffee, tulip, crayon" ... and then we talk for about 5-6 minutes and at the end of the conversation, he asks for me to give him three of the words.  Then Doctor 2 comes in and says "cheese, shirt, church, velvet, keys" ... and we talk for 5-6 minutes, and they he asks for all 5 of his words.  Well THEN Doctor 3 comes in and says "store, cough, sweater, bells, baby" ... and at the end of our talk, he doesn't ask for his words at all!  So by the time Doctor 4 comes in, it's all I can do to not shout out "hairdryer, muscle, calm, ocean, paint, army, pencil!" just to get them outta my head.  So Doctor 4 asked for just two of his words, but I said "yanno, I'm gonna give you 7 - because Doctor 3 didn't ask for any of his and now they're just screaming to get out."  Suffice to say, my short-term memory - and, thus far, my sense of humor - is fine.

And I've checked ... I still don't see a tail.