My PD Story
I was diagnosed with Parkinson’s disease (PD) in September 2009. My DBS story began in June 2020, when I underwent three surgeries to have a deep brain stimulator (DBS) installed in my head. A DBS device is similar to a cardiac pacemaker, except it sends electrical shocks to my brain instead of my heart. The benefits of said stimulator are relief from some Parkinson's symptoms, including tremor, bradykinesia and rigidity/stiffness. Successful DBS surgery also allows people with PD to reduce their medication.
My first surgery took place on June 9. The surgeon inserted screws into my cranium and used an MRI to take a picture of my brain. This was an outpatient surgery and I found it to be the most painful recovery of the three surgeries.
My second surgery took place on June 19. The surgeon opened my brain to insert an electrical circuit. With assistance from my neurologist and a trusted PA, my surgeon placed two leads: one in the right and one in the left side of my brain. The leads helped improve function on opposite sides of my body. The last step was to connect the wiring to the leads and wind up the wiring under my skin, for the future connection to the neurogenerator. This was an inpatient surgery requiring one night's stay. After a well-deserved night of pampering, I returned home in preparation for the final surgery.
My third and final surgery, to connect the system, took place on June 29. This was an outpatient surgery that placed the neurogenerater under the skin in my chest and connected the pieces of my three-piece brain puzzle. The surgeon used a ‘boring’ tool to create a tunnel from behind my ear down my neck to the neurogenerator to complete the circuit.
I understand that currently, they are offering a single surgery of a longer duration instead of the three I experienced. I believe that this all-in, one-time surgery still includes the option of being awake during the second procedure. If you trust your neurologist and surgeon completely (as I did, do, and always will) and you think you can handle staying awake during surgery, I promise that you won't regret it. I found it to be the most fascinating experience in my life! I wasn't in pain, and I was able to communicate with my neurologist as I watched him 'tune in' the system by testing my arms and legs for rigidity.
Two weeks later, they turned the system on. My wife and I watched as my neurologist adjusted the frequency and amplitude and the tremors miraculously melted away! Tears welled up in my eyes as I rose from my chair and walked, without freezing, right out the door.
This is not where my story ends, though. I was told that the battery life in my neurogenerator would last some three to five years but would probably need replacing sooner. On the day before Thanksgiving (November 23, 2022), the iPod that I used to monitor my neurogenerator indicated in yellow that I should replace the neurogenerator as the battery was losing its strength. I called and scheduled my replacement surgery, which was delayed until December 27 due to the holidays and a blizzard.
In the four days between Christmas Eve and the rescheduled day of surgery, my neurogenerator had failed completely and as expected, my condition worsened steadily as my brain wasn't generating enough dopamine. The tremors, bradykinesia and rigidity were taking over. The only relief I found was when I slept.
The doubts began to creep in: What if my neurosurgeon couldn't turn on the new neurogenerator right away? What if the DBS didn't function as well as I had previously experienced? After all, my symptoms had progressed since my original surgeries; would the DBS be able to keep up?
Upon my return home after the surgery, I went to take a nap. In that moment, I suddenly understood the wave of emotions that Ebenezer Scrooge experienced as he gleefully repeated, "I don't deserve to be this happy." I had been given not one, but two, opportunities for redemption in my life! The significance of the first I had minimized and attributed to the marvels of modern science. But the second has stricken me so powerfully, I feel compelled to share my story in hopes that it might encourage someone else to consider DBS!
I am grateful to all the neurosurgeons, neurologists, PAs, nurses, anesthesiologists and support staff personnel who work to help people with Parkinson’s disease live better lives. I am also grateful to the Parkinson’s Foundation for providing resources to the PD community. I have attended symposiums and used their online exercises classes to learn more about Parkinson’s and manage my disease. I have also used their legal resources at times.
Finally, I cannot express in words how grateful I am to my wife and soulmate whom I so wisely married over 34 years ago.
from the Parkinson's community