When I decided to go forward with deep brain stimulation (DBS) I realized how difficult and significant a decision that can be. In making my decision I had many resources to draw upon, including a blog of someone who had undergone the procedure. While every Parkinson’s journey is different, I nevertheless found it quite useful. That is why I decided to document my DBS experience through a blog I hope can be of some use to future DBS “deciders.”
By way of background, I was diagnosed with Parkinson’s disease (PD) in July 2012 at age 56. Like most who hear this unwelcome news, I was initially devastated. I was not surprised, however. My symptoms were textbook, and the internet allowed me to diagnose Parkinson’s well in advance of my visit to the neurologist. My primary symptoms at that time were minimal and included a slight hand tremor, reduced arm swing when walking, diminished handwriting and general slowness of movement.
By the time I decided to undergo DBS surgery my symptoms had worsened and included a prominent resting tremor in the left hand, muscle stiffness, slowness of movement, muscle cramps in the feet and calves, a “masked” expressionless face and an extremely annoying condition commonly referred to as “restless leg syndrome.” There are also non-movement symptoms unrelated to motor function such as mild cognitive impairment, REM sleep disorder, reduced sense of smell, tormenting dreams and a quiet raspy voice, among others.
The most significant Parkinson’s symptom was a substantial worsening of a pre-existing scoliosis in my thoracic and lumbar spine. It resulted in a significant increase in the left-leaning curvature of my spine, commonly referred to as “Pisa Syndrome,” causing severe and chronic pain. I have great difficulty walking or even standing, e.g. at a line in the grocery store, etc. even for a minute. Virtually any time that I am vertical, i.e. when standing or walking, I’m in pain.
Because of the pain and lack of mobility brought about by Parkinson’s, I was forced about three years ago to give up my career as a lawyer. I realized one day as I struggled while arguing a motion in federal court that, if I were an objective observer, I would not view my performance in court as living up to client expectations. The pain and tremor were beginning to affect my ability to effectively advocate. Additionally, it goes without saying that a shaking lawyer does not instill client confidence. I decided to quit before I embarrassed myself, harmed my clients or both. It was a very difficult thing to do, however, I’m very fortunate to still be working part-time, mostly from home, assisting my wife in her law practice.
At about the seven-year mark I began to experience wearing off of my medication at night. The resulting hand tremor kept me awake. It prompted me seriously explore DBS as an option. DBS can look scary if one focuses only on the risks, but the risks and side effects have to be viewed in context. The frequency of bad things happening with DBS is relatively small, though very real if they happen to you.
I had a bilateral DBS procedure requiring two surgeries. The surgeries were supposed to take place about one month apart. The first surgery took place May 2, 2019. Two weeks later I suffered a heart attack requiring two stents. Because the heart condition required that I take blood thinners, I had to postpone the second surgery until December 16, 2019.
I don’t want to overstate the case, but this surgery is amazing. Before DBS I took 14 Sinemet pills per day (more than 5,000 pills per year). I now take NO Sinemet…the DBS has eliminated the need for that medication entirely. Because of the DBS surgery I have, for the first time in seven years, no tremor. I am standing about two inches taller and straighter. My facial features are more natural, as is my body movement generally. My back pain is improved, though still troubling.
There are tradeoffs. My speech has been negatively affected. My skull is lumpy. I have some dyskinesia since the programming began. I am still shuffling my feet and not swinging my arms when I walk.
The relative success of DBS is, to a large degree dependent on expectations. If one expects to be symptom free, then disappointment inevitably will follow. For me it was as beneficial as I could have hoped for. I would do DBS again in a heartbeat.
Brian’s blog is available at DBSandpisa.wordpress.com.
Learn more with the new Parkinson’s Foundation book: Surgical Options: A Treatment Guide to Parkinson’s Disease.