It’s now been more than 6 weeks since my deep brain stimulator implantation. The incisions are mostly healed, the hair is well on its way to growing back in (in true chinchilla fashion), and I’m starting to remember that this new lump in my upper chest doesn’t like to be banged into things. In short, things are beginning to normalize and stabilize. Clearly, that’s a cue for another major change to take place, so I have one scheduled next week, just to keep things interesting. I’m having the device turned on and programmed and I’ll be able to get some initial indications about how well DBS will work for me.
The lesioning effect is entirely gone now, but the fact that it caused such a significant positive impact for a couple of weeks bodes well for the future. I’m actually looking forward to the programming sessions, and I have hope for an eventual reduction in the amount of Parkinson’s medications I’m taking. That doesn’t always happen, but that’s the plan. I’ve already reduced the amount of Requip XL I’m taking and I’ve eliminated amantadine altogether, and the hallucinations have reduced somewhat at the expense of more dyskinesia and tremor. The nights are a little more lonely now without all the squirrels, cats, and phantom people moving around just out of direct sight, but I’m sure I’ll make new friends. I might even try sleeping.
I have been an outspoken advocate of exercise as a weapon in the battle against PD, but since the surgery, it’s really been brought home to me how truly important it is. When the lesioning effect was at its peak, I decided to stop using the cane I had grown to rely on, and I began to walk for what seemed like several hundred miles every day in somewhat of an unusual location – the hospital where my DBS surgery was performed. I tried walking in my neighborhood (I live in south Texas – potentially heatstroke-inducing behavior if the walk starts after the sun rises), and I tried the mall. (No. Just no. If I have to explain why, you’ve never been in a mall.) The hospital is huge, has more corridors than you can walk in a month, and has even more stairs. There’s also the added benefit that no one gives a second glance to the bald guy with hundreds of staples in his head walking up and down with a beautiful but slightly intense woman behind him screaming, “swing your arm, lift your knees, doggone it!” It’s been perfect, and I now love climbing stairs. I swear.
As an additional benefit, I’ve had plenty of time while walking to think and talk with my wife about solutions to all the world’s problems. I sense a forthcoming book, but we’ll have to spread it out. It’s just bad form to win too many Nobel prizes at once.
One of our topics of conversation was my cane. I was eager to give it up, but I found that it was harder than I expected, and I spent some time examining why. There were the obvious reasons – stability during balance disruptions, help getting in and out of my car (difficult for anyone – I haven’t given up my sports car yet), and added confidence getting up and down stairs. All completely reasonable physical needs, but not the only reasons the cane was hard to give up, as it turned out.
The physical symptoms of PD can change and worsen over the course of just a few hours, and can ease and improve just as quickly. As I’ve mentioned before, it’s sometimes uncomfortable for me to have someone tell me how good I look or how well I’m doing. I know that 99% of the time, those comments are honest, well-meaning, and rooted in kindness and truth. However, I have an unreasonable discomfort with the remaining 1%, when I can sense an undertone of something else – perhaps an unstated question about how serious this whole thing is anyway, or a level of skepticism about why I’m making such a big deal out of this disease, or a bit of irritation about why I have handicapped license plates on my sports car. I discovered, to my surprise, that I carried and used the cane in part as a kind of explanation, and even an excuse. Why does he limp? Oh, he has a cane – must be explainable. Why does he fumble with his wallet in the checkout line, drop his change, and take so long? Oh, he has a cane – he’s probably sick or injured, and not drunk or just clumsy. Why is that young guy parked in the handicapped zone? He looks fine – oh, wait, he has a cane. Never mind.
For me, the cane has been not only a physical aid to movement, but also a mechanism for answering questions before they were asked, and a way of opening up conversations about PD on MY terms. It’s a defense mechanism in the most classic sense, and it’s indicated to me that I’m probably not as far along on Dr. Kubler-Ross’s 5-stage process as I thought. Current thinking about that grieving process is that its not sequential, and may not even be scientifically defensible. The stages of grieving she described ring true to me, though, and I am probably spending more time in the denial, bargaining, and anger stages than I thought.
There are deeper, more personal reasons why the nature of this disease is difficult for me to bear, and perhaps I’ll discuss those at some point. In the mean time, I’ve resolved to try to let go of the cane, and trust that the DBS system will do what it’s intended to do – reduce the severity of some of my motor symptoms. I’ve also resolved to let go of the 1%, and be grateful when I hear, “you really are looking great – I’m glad you’re improving.” I’ll work on taking it as a compliment and not a challenge, and savor it while I can.
I was fortunate to see a series of webcasts from the Midwest Parkinson’s Conference last month. One of the speakers, David Zid, described an exercise program that he and a colleague designed to help delay the impacts of PD. I tried some of his techniques with my wife, and the results have been extraordinary. You can find some of his videos on YouTube and on the AAPSG website at http://aapsg.org. I’d encourage you to take a look and evaluate for yourself. I have two PVC pipes I’ll let you borrow :-).
I’ve also begun a new course of physical therapy, and I’m optimistic that will help also. There are many good places in San Antonio that provide those services – I’m working with Access Quality Therapy Services. They specialize in movement disorders, especially Parkinson’s, and although I’ve only had one session with them so far, I’ve been very pleased. No one yells “swing your arm; get that hand out of your pocket; don’t MAKE me kick your butt,” like my wife, though. The denial is definitely over.
ⓒ 2011 Corey D. King