By now, we’ve all learned that life brings us the terrible and the beautiful, often by the same whim. Like most, I can speak with authority about beautiful things ended terribly, and terrible things that have bloomed into beauty I’d never imagined. Better minds than mine have explored this dichotomy, so I’ll not embarrass myself trying.
Fate, God, the Universe, or insert-your-own-belief-system-label-here handed me a metaphorical coin about ten years ago. At first, I could not decode the inscriptions. A few years went by and I learned to read the writing: Congratulations, you’ve been selected to experience Young Onset Parkinson’s Disease. Looking at my metaphorical coin, I could clearly see that one side depicted pain and tragedy. The other side was still indistinct, but I could see gratitude around the edges.
I hope you’ll believe that even at first, I was grateful my "coin" was Parkinson’s Disease, aka PD. For short a while, I was concerned that I might have MS or ALS. An aunt had recently passed away after a battle with MS. Instead, I had been given something that would slow me down but probably not bring about a premature demise. As my father advised not long after I told him about my diagnosis, “I have terrible news. You’re going to live another 35 or 40 years.” So I have lived, and started to learn lessons that otherwise would have never penetrated my thick skull. We seem to be programmed as a species to look for purpose in everything around us. Whether there is design, intent, or purpose behind the malady in my melon, this is probably the mildest way that I might someday learn a lesson that has this far escaped me: humility. Time will tell. I’m trying to be an open-minded pupil.
The symptoms of Parkinson’s Disease are caused by a decrease in dopamine in the brain. The gold standard for treating PD is taking levodopa pills to increase the amount of dopamine available in the brain. Tragically, it’s almost guaranteed that levodopa will eventually cause spontaneous and unwanted muscle movements, making the treatment less tolerable than the disease. This is the point I’ve reached. “Just enough” levodopa for my muscle tightness and pain is “just a little too much.” Another coin with heads and tails.
Around this time last year, a pair of neurologists were both suggesting that I reconsider my rejection of Deep Brain Stimulation (DBS) therapy. Emphatically suggesting. I’ve had a fear of having my teeth drilled at the dentist since I was a little kid. I couldn’t imagine going through a procedure where I’d have a pair of holes drill in my skull while I’m awake. Yes, you read that correctly. (Those familiar with the latest techniques for DBS patients might be saying, “But some hospitals are doing the entire procedure with the patient asleep!” Acknowledged. Perhaps a topic for another time…) Increasing levodopa issues and off-meds neck pain brought me to a junction. "When you come to a fork in the road, take it..." Lynette and I decided to at least find out whether or not I met the criteria to be considered.
My first evaluation was conducted at the University of Minnesota over the course of 3 appointments and a 3T MRI. I was turned down by the team there, told that I wasn’t a good candidate for DBS because my symptoms were not yet severe enough. The team down at the Mayo Clinic in Rochester had a different perspective and offered me that chance to have a Deep Brain Stimulation system implanted. With Lynette having an engineering degree and me just being a general math and science nerd, the team went into minute technical detail about the evaluations, imaging, and implant procedure. Knowledge is comfort.
On April 26th, I’m scheduled for surgery #1. A neurosurgeon will insert a pair of wires through the skull down into the nether regions of my brain. I will be awake and mostly aware of what’s going on, because I will be an active participant in the fine-tuning of the final placement. They will send test pulses down the wires and observe the effect. When my muscles relax and dexterity returns to my fingers, they’ve hit the spot. Lock it down, coil up the loose ends under the scalp and stay overnight for observation. Two weeks later, they’ll actually put me to sleep for surgery #2. A device similar in size and function to a pacemaker will be implanted near my collarbone. Then a longer wire will be run under the skin and up my neck to connect with the previously installed wires. The next day, the system gets powered up. Then begins the process of programming and tuning the signal for my particular malfunctions.
Outcome forecast: 80% to 90% likely that this will be beneficial and without severe complications. 6%-8% chance of minor complications that should resolve quickly, such as a skin infection or minor brain bleed (is there really any such thing?). 1% - 2% chance of bad stuff like permanent damage, angel’s wings, or suicidal depression at some later point. Sometimes I hate statistics and probability. The good news is that I’m much younger and healthier than the average DBS patient (folks in their 60’s). So I’ve got that going for me. Which is nice.
Am I ready? I think the answer is yes, because I wish it was happening tomorrow.
Now, for those of you who are inclined toward prayer or channeling positive thoughts/energy, I ask that you NOT do so on my behalf. My fate will be as it may, and I’m satisfied with that. I ask instead that you devote those thoughts and efforts to the well-being of my children, my wife, and my parents. They are the ones who deserve your hopes, prayers, good thoughts, and other positive energy.
Finally, I’ve set up a page on Caring Bridge. We used this when my son had his latest open heart surgery in 2013. It’s a convenient way for me to give updates before surgery and then allow Lynette to post updates while I’m otherwise occupied or not keen on typing any messages. (They have an app for that.) You can find my Caring Bridge page at:
You’ll be asked to login, but you can do so using your existing Google or Facebook account, or create a new one directly on Caring Bridge if you like. Otherwise, look for eventual post-op updates here.
Of course, it wouldn't be proper to conclude an announcement of this magnitude without a proper quote and reference to St. Norman.
“When I was young, a teacher had forbidden me to say "more perfect" because she said if a thing is perfect it can't be more so. But by now I had seen enough of life to have regained my confidence in it.” ― Norman Maclean,
This reminded me of my own maniacal aversion to the improper use of the phrase "very unique." (Actually, it first reminded me of Miracle Max and "mostly dead," but I'll avoid that one here for obvious reasons.) But if St. Norman can apply shades to perfection, then I can certain embrace that approach and say that I'm looking forward to joining this distinguished club and becoming more unique.