Parkinson’s disease (PD) has dragged me through hellfire; it has wrecked my body and tested my soul. This ordeal has taught me much about life in general, and about matters both great and trivial. Following are some highlights of my life with PD, and of what this mean teacher taught me about modern medicine, its marvels and pitfalls.

It happened 10 days before Christmas 2009. I was somewhere over the rainbow, in deep slumber—when I felt a hand pressing my shoulder and heard a voice, “Dr. Tellis-Nayak! I want you to be awake!”

Reality dawned ray by ray—I couldn’t budge; I was belted down, my skull was in a vise inside a steel trap bolted down to the metal bed. Around me stood six men and women, all oozing smarts. I saw, on my left, a compact figure wearing a white gown and a triumphant smile. “How do you feel?” Dr. V asked. Suddenly, reality crashed in, and everything came into focus.

I was at the hospital getting a brain tune-up from Dr. V. I was under “conscious sedation” and told to stay awake, but trusting my brain in Dr. V’s hands, I had slid into a midday siesta on my personal “Fantasy Island.”

PD had sneaked up on me; my left-hand tremors started in 1995. PD turned my world upside down, and it directed its unmitigated fury toward my professional life; it took aim at areas where I felt particularly proud and would hurt the most.

Worse, PD made me watch in slow motion my descent into a personal hell. The professor, the researcher, and the public speaker in me suffered exquisite mortification. My strut gone, now I shuffled my way to the podium; I stood there unstable and ungainly, my left hand shaking against my will, my voice barely louder than a squeak, my speech reduced to a mumble, my words slurring; I could not read my scrawl on the blackboard.

My medical regimen had blunted PD’s attack but did not halt its advance. My intellectual and spiritual defenses did not match its resolve to drag me toward the black hole of helplessness, meaninglessness, self-pity, and despair.

On the verge of surrender, I reached out to Dr. V for a brain tune-up. He recommended DBS (Deep Brain Stimulation). I signed on immediately.

DBS is based on the evidence that each human action (motor, memory, or cognition) is modulated by a specific brain circuit located in a specific brain area. DBS works as a radio works. You turn one dial to locate the station and another to turn the volume up or down. Similarly, you locate the brain area whose circuit is linked to a specific human activity. You implant a pace setter to stabilize, accelerate, or slow that circuit and so to regulate the activity associated with it.

Two professors at Grenoble, France, introduced DBS to the world in 1987 as an effective treatment for PD. It is now used to treat other movement disorders and neurological and psychiatric conditions. About 100,000 DBS implants have been done worldwide.

I was at the hospital the night before my early morning date with DBS. Dr. V planned the event to unfold in two steps. First, they wrapped a metal trap around my skull, calling it a “halo.”

The halo bolted down my head immovably as the medical cognoscenti mapped my brain; the coordinates set and traced the optimal route to my subthalamic region. They numbed my scalp, cut a five-inch gash, and, with a press-drill a bit fancier than my TrueValue version, they bore a hole the size of a quarter into my skull.

Human brains have no pain feelers. So, under “conscious sedation,” I was supposed to stay awake and enjoy the sight and sounds of my own demolition. I chose to snore away in dreamland. 

The next part was high drama. The docs held an electrode (metal rod) at the hole in my head (front-right and due north from the eye), angled it about 45 degrees, and drove it through the center of the brain toward a pea-sized target in the subthalamus basement of the brain.

The mindless invader decimated my brain cells in its path and sent them into oblivion, each emitting a digital dying wail. I mourned the IQ points I lost in Operation DBS.

With the rod lodged close to its destination, Dr. V pulled me back from my dreamy escape. His smiley-like smile told me the train had arrived, and now he needed my help to pick the right platform where it should be stationed.

For the next 15 minutes he twisted and turned my left hand in every direction, while Dr. O, his partner in this invasion, jabbed, stabbed, and poked around my brain till they found the optimal spot to park the hot rod.

To spare me the gruesome sight of the last scene, the medicine men tripped my main fuse and blanked me out. They cut open a pouch below my right collar bone, nested in it a thick credit-card-sized battery with a trailing cable, which they buried under the skin along a path from my chest, winding up behind the ear and joining it to the electrode under the skull.

My traumatized brain protested, swelled, and delayed the turning on of the switch buried in my chest. They gave me a remote control that turns the stimulator in my brain on or off.

I take care to keep out of reach of my grandkids, lest they should get ideas and use it as a joystick.

The gurney brought me to the recovery room looking like Lazarus swaddled in bandages staggering out of the sepulcher.

I was relieved that I survived the eight-hour storming of my defenseless brain, and was buoyed by the company of Mary, my long-suffering personal nurse and bride of over four decades.

Back in my room a bevy of belles—bright-faced, freshly minted young nurses—greeted the return of their most compliant patient who since last evening had let them poke needles into me; draw blood from me; and thrust thermometers, meds, and other foreign objects into my orifices.

I felt blessed among these women.

My son had dropped in the night before and had fortified my soul for the ordeal. This evening, he came with his consort and their two bouncy cherubs in tow. The next two hours were pure chaos—laughter, son, and horse play as the cherubs revived Grandpa Lazarus.

Jocelyn, RN, had recorded my runaway blood pressure a little before the kids came. She dropped by to track it again, as they were about to depart. Her jaw dropped to the floor: My blood pressue had plummeted down to normal!

Do kids have a role to play in brain surgery? Why do hospital visiting rules for kids vary so widely? Some hospitals encourage families to visit, when some others cannot seem to bear the sight of them. I wondered which of these policies and practices were rooted in firm evidence and which in common sense?

 

Next month: Anomalies of Bionic Medicine

Vivian Tellis-Nayak, PhD, is senior research advisor at National Research Corp., Lincoln, Neb. He has been a university professor, whose scholarly work has been published in national and international professional journals. He has conducted research in the United States and abroad, and his major findings have reached a wider public through his writings in trade magazines. Tellis-Nyak can be contacted at vtellisn@gmail.com.