The progression of Parkinson’s is similar to the concept of “boiling a frog”: life’s natural coping mechanism—time—tends to mask the true weight of the illness from the afflicted. Now imagine if the emotional distortion of time did not exist; what if one could instantaneously transit the full range of Parkinson’s most debilitating symptoms accumulated over a decade, and then with a literal push of a button set back the clock ten or more years with almost no indication of having the disease?
This is not only possible, but it becomes the extant reality for thousands of patients with Parkinson’s and other neurological disorders who undergo successful Deep Brain Stimulation (DBS) surgery. I am now one of them.
The past six weeks have been an emotional, intellectual, and spiritual rollercoaster that defies description. In the simplest terms, I have experienced every degree of capability and every symptom of Parkinson’s accrued over ten long years during the thirty days following brain surgery. But that’s not all: at the end of this rollercoaster is a button that allows the actual disease to vanish or return instantly when pushed.
Please let me explain. DBS consists minimally of two surgeries: the first is brain surgery to implant two wire leads deep within the brain. The patient is awake during this three hour procedure so that the proper placement can be assured by judging the relief of symptoms when a small amount of test current is applied. It is, shall we say, “uncomfortable,” but it goes by incredibly quickly.
The patient spends one night in the neurological intensive care unit with some people who are truly hurting, and then is discharged the next morning if recovering well. The ICU stay alone is worthwhile: it is a humbling opportunity to readjusts one’s perspective.
The second surgery occurs six days later. The wire leads left from the first surgery coiled under the scalp are unwound, and then run beneath the skin in the neck and torso to two pulse generating batteries (each 2” across) implanted below the clavicles. This one was a bit more painful, but when considering that it was the second major surgery in less than a week, not too bad. I was back home twelve hours after leaving, and that includes the 2.5 hour drive each direction.
I slept in a chair for about a week. The four incisions, which have yet to fully heal, make feather pillows feel like they are sharp, dry clay.
Immediately following the brain surgery, I experienced the “honeymoon effect,” and for about four days did not show any Parkinson’s symptoms whatsoever. The symptoms slowly came back, and within weeks I had transited the entirety of the disease’s effects since diagnosis.
It was a “Flowers for Algernon” period, physical disorienting and mentally confusing. For a time, I had great difficulty not in knowing who I was, but in knowing how I was.
Five weeks after the first surgery, I returned to the hospital to turn on the pulse generators and begin to optimize the various electrical parameters to deal most effectively with the most egregious symptoms.
I had stopped taking my medications twelve hours earlier to provide a realistic template for the implants, and I could only walk into the hospital with the aid of crutches. My eyes were dreary, it felt as though there was a sock in my mouth, and I was incredibly fatigued. The car ride down had been extremely painful.
The Nurse Practitioner turned on the pulse generators and tried the first setting. It helped a bit. She kept trying new parameters and thirty minutes later, I was bright eyed and walking down hall, swinging my arms, and with only a barely perceptible limp—and still no medication. Last Tuesday, I went in again for a fine tuning. The results are amazing.
I have cut my Sinemet—the medication with the only ingredient that clearly works, levodopa—in half. I have stopped taking Azilect, Requip, and Comtan, and I feel great. I can drive any time of day or night now, I’ve been working out again, and my mind is slowly catching up with my body. I go back to the hospital for a final tune up this Tuesday.
A part of the tune up process, which is done by a Nurse Practitioner (ARNP), a truly incredible person gifted with a sharp mind, highly technical ability, and compassion surpassed by none I have ever met, is to turn off the pulse generators momentarily as we try a new base line parameter.
It is probably shocking to watch: the change is immediate and severe. My right hand immediately trembles uncontrollably, both legs kick out repeatedly in dyskinesia, and I can’t sit still. But the most frightening thing to watch is my face, as my eyes become clouded, my mind fuzzy, and I hunch over as though there is a hundred pound weight on the back of my neck. It becomes difficult to breathe.
Invariably the Nurse Practitioner apologizes when we must turn off the pulse generators, and invariably I am confused, but touched, by the apology. This is my favorite part of the appointments.
Instantly, I am transported back to the painful, heavy load of an existence developed over ten years. And just as quickly, in the time it takes to take a deep breath, I am back to the “old” Peter again, sitting straight, eyes wide and full of energy.
I never want to forget both feelings, even though I’d prefer to spend my life in the “power on” state. I am fortunate beyond words for so many things, not the least of which is the ever present reminder of how difficult life can be.
When undergoing the extensive pre-screening for DBS, I was asked by the surgeon how would I determine if the surgery was a success. I answered, “If I am marginally better in any way for one day, then I will consider the surgery a success.”
How lucky can a guy get? I guess I know the answer.