Normally I’m pretty good about observing important anniversaries (never forget a birthday or my wedding anniversary) but yesterday one almost slipped by me. Which is surprising, since I literally can’t get it out of my head.
Yesterday, at about 10:00 or so in the morning, was exactly five years since I had electrodes installed in my head as the first part of my Deep Brain Stimulator (DBS) procedure. I woke up in an operating room in Northwest Memorial Hospital in Chicago with my neurosurgeon, the amazing Dr. R., literally in my head, listening to the sound of my brainwaves amplified on what looked like a pretty impressive sound system that played nothing but static. I had to be awake as Dr. R.’s team talked to me and bent my elbow and listened to the sounds of the static to make sure they were accessing the correct parts of my brain. Every now and then, Dr. R would turn a knob or something and the static would get louder and my leg would start to shake. I’ve chronicled the experience in greater detail previously here: https://djgourdoux.com/2012/01/23/happy-deep-brain-day/
This was me after the procedure:
saying, “here’s the remote control to your husband.”
It was two weeks later that Dr. R. completed part two, the second surgery, while I was asleep, when he installed a neuro-transmitter in my chest and ran the wires from it up my neck and to the electrodes installed in part one. It’d be about a month later before my new Movement Disorders Specialist, Dr. Z, configured and turned on the transmitter, programming it to send impulses to my brain to trick it into thinking it’s getting the dopamine that Parkinson’s has taken away. Since then Dr. Z has taken excellent care of me, tweaking and adjusting the settings of the transmitter according to what I am experiencing at the time.
About a year ago, Dr. R. was back, to perform a simple, out-patient procedure to replace my transmitter’s old battery with the new one. Once again, I was awake and lucid as Dr. R and his team went about their business, answering Dr. R’s trivia questions as he played classic rock on the sound system, correctly identifying Ringo Starr as the drummer on Tom Petty’s “I Won’t Back Down.” They must have had me on some pretty good happy anesthetic, because I remember enthusiastically singing along to that and other songs, which the two other people in the world who have ever heard me sing know I only do when under the influence of extreme amounts of alcohol , and that these two people carry with them deep emotional and psychological scars from the experience. So my apologies to those in the operating room who had to suffer so – may your therapy be swift and effective.
Five years later I know what DBS has and hasn’t done for me. It was never intended to be a cure for Parkinson’s, and it hasn’t alleviated the need for medications. I still wear on and off, just less frequently and to a lesser degree than before. There have been side effects, such as impaired speech and handwriting and balance; these are adjustable by changing the settings on my “remote control” device. Essentially, if I turn the voltage down, the side effects are minimized while the wearing off periods increase in frequency and severity, turn the voltage up, and the peaks and valleys of the meds cycle is largely flattened out, while the side effects worsen. I’ve learned how to balance these, and there should be sufficient voltage capacity and tweaking that Dr. Z can do to effectively manage these symptoms for a long time, even as the disease progresses.
Last October, I participated in a three day clinical study designed for PD patients with DBS installed. For parts of the study, I had to go varying times with the transmitter turned off, and for most of these times, my PD symptoms were unbearable. It served as a sobering reminder of what life would be like without having had this wonderful chunk of hardware installed in me.
“Gentlemen, we can rebuild him – we have the technology.” Aside from the occasional involuntary hop whenever the toaster pops, or the overwhelming urge to walk backwards when I hear the beeps from nearby construction sites, my DBS experience has been overwhelmingly positive. I want to thank the incredible team of doctors and specialists and nurses at Northwest Memorial, in particular Dr. Z. and Dr. R., for the care and attention they have devoted to me. I am lucky and blessed that my experience with this rotten disease is navigated by such brilliant and good people.