June 12, 2008: Yesterday I had my first “programming” session to adjust the settings on my implant. This experience seemed like something out of science fiction (as has this whole process). Renee, the neurological nurse who programmed me, used a remote control device to communicate with the implanted technology. She held the remote over the spot just under my collarbone where the battery pack was implanted. The battery pack in turn communicated with the stimulation device implanted deep inside my brain, with wires tunneled under my skin to connect the two. Renee then used a hand held tablet gizmo which somewhat resembled the medical tricorders used by the doctors on Star Trek. She tapped on the screen with a stylus to individually set the levels of stimulation of eight electrodes, four of which were hooked to brain cells on each side of my brain. The electrodes on the left side of my brain control the movement and sensations of the right side of my body, and vise versa. My Parkinson’s symptoms primarily affect the left side of my body, so she started with the right side of my brain.
As Renee activated each electrode with her tablet gizmo, I felt different sensations over my body. And no, unlike the woman in the TV commercial, I did not smell burnt toast. Mostly, it was like electrical tingling in different body parts. Sometimes my eyes would react and go out of focus, like they do when I try to stare at those 3D drawings in the newspaper where you have to stare until you see a 3D image. After about 2½ hours of this testing, she set the levels and sent me off for lunch. After lunch, I went back, and she showed me how to use my own remote control at home.
So now I can control my own DBS levels, within parameters that Renee set up for me. If I get dystonic (which means cramping muscles, unbelievable pain – where my toes curl under, my ankles turn outward, my arms raise up elbows first and I can’t lower them, my neck twists to the left and down – and I’m grateful because some Parkinson’s patients get these cramps in their facial muscles and that hasn’t happened to me yet), I can turn up the stimulation and get some dopamine flowing. When I get dykinetic (which is a side effect of my medication and results in uncontrollable swaying, dancing movements that my sister says looks like I desperately need to use the bathroom), I can turn down the volume. Either way, I get a quick reaction, which is impossible with pills.
I think I might enjoy living like a Borg (for you non-trekkies out there, the Borg are an alien race who are part humanoid but have machine parts implanted). I still have Parkinson’s disease, I’m still in a great deal of pain, and it is still very difficult to do much of anything, but now I look cool! (Except for the patch of very short gray hair right on the top of my head and the inch of gray roots that I can’t dye until the incisions heal. Yeah – besides that, I look like a very cool 42 year old mom with my remote control.)