Monthly Archives: December 2015

Wow…………………………………

I feel like I have gone to war and came back from the trenches alive, but scathed and much diminished. DBS is the epitome of sensory overload:  from the screwing of bolts into my skull to the tightening of the metal frame to keep my head still and the drilling of my bones–making a noise I can only describe this way:  Imagine standing on an air strip without ear mufflers and hearing a squadron of B52 bombers approach, fly right above your head, then recede, having generated such intense vibrations that your jaw is trembling.

The lack of fear that propelled me before the surgery has been replaced by a sense of vulnerability–quite a departure from my zone of comfort. My husband, in his post-op messages to our families and friends, wrote: The warrior is intact. I can tell you that I didn’t feel like a warrior when I came out of anesthesia. As I was being wheeled through the corridors (at what seemed to be a frantic pace), all I could think of was: The operation failed, I chose the wrong doctor, now they’ll have to go back and fix it.  I was so dyskinetic (my head moving ceaselessly in all directions) that I was convinced this was the proof that the surgery had failed. I remember looking at the smiling faces of the nurses, saying whatever you say when an operation is a success, and cursing them for lying to me. F…ing nurses, f…ing hospital, f…ing  illness.

In time, though, the dyskinesia subsided and I calmed down.  Even befriended the nurses I had cursed. And then, slowly, I began to believe my family when they explained that my dyskinesia was in fact an excellent sign: It meant that the neurosurgeon had hit the target. By poking around my brain, he caused a lesion that reawakened some dead cells. That was exactly the outcome he hoped for.

As far as my war wounds–my shrapnel, I call it–they consist of 40 staples across my chest, where the two neurostimulators sit, a fair amount of metal on my head, and wires running behind my ears.

But the main thing is that I AM ALIVE + KICKING.

Many thanks to all the people who wished me well.  In time, the staples will be removed, the scars will fade, and the programming device will work with the accuracy of a Swiss clock. All things to look forward to.

 

Countdown to Deep Brain Stimulation (DBS)

Tomorrow, in the skilled hands of my neurosurgeon, I will undergo an amazing transformation. I look forward to the changes that will take place in my body once I’m wired. What should I call myself then: bionic? robotic? mechanic? metallic?  I know I will be different; what I don’t know is how different. After weeks of programming, I will morph into a proper hybrid. I don’t mind being a hybrid. A pioneer of sorts, just like the Prius. Ah, yes… not the sexiest car on the road, but what marvel of efficiency!  The Prius runs on two sources of energy: fuel and electricity. I, too, will have batteries to check and to replace regularly. As for my fuel–my medication–it won’t be sold at the local gas station, but will be supplied, in much reduced doses, by my friendly pharmacist.

DBS is not going to cure me. (There is currently no cure for Parkinson’s.) What it will do, though, is to block the nerve signals that cause my symptoms while stimulating the area of the brain that controls movement and produces dopamine. The goal is to restore functionality by increasing mobility.

That’s good enough for me. Let the operation begin!

To all of you who have expressed love, support, and concern over the past few weeks, thank you.  I will keep you posted.