The flesh-colored, latex mask felt like a thicker version of the black, plastic masks we wore as kids while playing Zorro, brandishing our homemade swords and shouting, "En garde!" (not knowing the difference between Spanish and French). This one was initially warm and supple as it was laid on my face like a towel at a spa. But as I stared at the ceiling through the eyeholes, the substance hardened and it became clear that the mask did not have disguise as its purpose. Instead of being secured around my head, it was securing my skull to a frame, making it immovable for the one-hour duration of the procedure. The picture of a Frankenstein-like character, strapped to a gurney, came to mind.
This was not the first time I had been brought to this small room tucked away in the basement of the University Hospital. Despite what my amplified tremors might have indicated, I was not afraid. I knew I was in good hands as my head was slid into the "doughnut hole" of the Positron Emission Tomography (PET) machine. Fortunately, I had no fear of closed in spaces. It simply reminded me of being a curious youngster and poking my head in a culvert pipe or an oversized clothes dryer to see what was in there. But, this was no place for claustrophobiacs.
The procedure requirements had started out innocently enough; no food or water for at least eight hours and no Parkinson's disease medication for at least 14 hours. Then there was the mask, a little constraining but quite comfortable actually. The first PET scan was apparently to find out whether I had any brain to work with. Apparently there was enough cerebral functioning left to continue.
Now I am not generally anxious about needles; it is just when someone I don't know wants to poke me with one that I get a little tense. It didn't help much when I was the technician would be shooting a "tracer" into my bloodstream. The image of red-hot tracer bullets fired in the dark didn't really put me at ease. But without even saying, "you will feel a little pinch", the injection was over literally before I knew it. A "tracer" is actually a small amount of radiation attached to a dosage of medication, which is then detectable using the PET scanner. The goal: to find out how my impoverished supply of dopamine would react to different stimuli (in this case, grapefruit juice). All in all, I napped on and off for most of the time, being awoken to receive my "stimuli" through a long tube while the PET scanner was quietly whirring away around my head.I did not need to be there. I had volunteered to be part of the study dealing with "Treatment Related Compulsive Behaviors and Impulse Control Disorders in Parkinson's disease". Now before you go jumping to conclusions, other than Scrabble, blogging, riding my motorcycle and pursuing adventures along the way, I exhibit no signs of compulsive behaviors or impulse control disorders. However, between 4 and 8% of PD patients receiving long-term treatment develop these complications. For some, it can be devastating. That is why it makes it worthwhile studying this problem.
Since developing Parkinson's disease, my awareness of the need for credible clinical studies has grown exponentially. Given that there is very little risk, participating in this study, and others, is one way I can fight back. It is a contribution I can make to the needs of others, like being a blood donor, an organ donor or just volunteering to help out.I am looking forward to completing the six session study. Not because I am anxious to have it finished, but because I get to keep my mask. Something to show my grandkids and tell them stories about how I got it. I might even tell them the truth…when they get older.