After all the anticipation, hand-wringing and planning, we know now that the DBS system works. Hurray! I’d be totally psyched up, were it not for this ferocious cough (lingering swine flu). And the dyskinesia. But I’ll get to that later, in this account of my initial programming session.
I drove up to Burlington Wednesday night. I took my last dose of meds at 4:45 p.m., in order to be really “off” for the 8:30 a.m appointment. Good thing brother Tom was driving me, because I was a mess, what with the coughing and the shaking. This was easily the most tremor I’ve had during any of my three recent “off” episodes. The marked asymmetry between the right side and left was obvious.
I sent Tom home, expecting three hours of tedium. I had read about the initial programming session in the textbook. The plan was basically to turn on each of the four contacts one by one, raising (I think) the variables (voltage, pulse rate, and pulse width) by increments, searching for a sweet spot where symptom relief would be balanced against side effects.
We begin with the first contact, the one at the end of the lead. Feel anything? No. (Adjust.) Feel anything? No. (Adjust.) Feel anything? No. (Adjust.)
Hold it. I’m still shaking, probably worse than before. Wow, do I feel strange.
OK, says Dr. Boyd. Tap fingers. Flop hands (pronate/supinate rapidly). I’m shaking and feeling weird. Tap foot, tap heel, tap toe. He fiddles with his touch-screen programmer. Oh my. How do you feel now? Not good, says me. Long pause. I’m searching my memory for anything remotely similar in my emotional memory. The best I can offer is the feeling of absolute despair and desperation and anxiety and unquenchable craving that accompanies a cocaine binge. A yawning anxiety is opening beneath me.
Dr. Boyd backs off the voltage, and immediately the feelings diminish, then go away. He’s looking at me to see if everything is OK. Yes, I think so. My head is still feeeling a bit dissociated from my body.
He explains that when the first contact touches the substantia nigra itself, it can induce feelings of overwhelming depression and suicidal ideation. He assures me that we won’t be using that contact again. Unless I misbehave. (Some joke! Don’t tell our boys at Guantanamo about this tool.)
On to the second contact. Feel anything? No. (Adjust.) Feel anything? Tremor is worsened. Tap fingers. Flop hands. Check for cogwheeling. Strike heel, tap heel, tap toes. (Fiddle.) My right arm begins to decrease its tremor. Feel anything? I’m clear headed, although slightly off in my perception of the space immediately around me (proprioception). Tap fingers. Flop hands. Check for cogwheeling. Strike heel, tap heel, tap toes. (Fiddle.)
That’s it. I can feel my entire right side relax. The muscles in my right shoulder, the entire right back and pelvis, and leg, all slacken at the same time. My left hand is shaking, Nothing else is … without drugs, for the first time in 12 years.
We resume the finger-tapping, this time with concealed excitement. Cross arms across chest and get out of chair. (Easy and perfectly balanced.) OK, let’s go walk. My posture is perfect, my gait is perfectly normal, and my arm is swinging naturally. Wow.
Back to the chair. More fiddling. Voltage is going up and now we are getting away from that zone we were in. (Can we go back now, please?). More finger tapping another hall walk, then another fiddle and -bam! – how do you feel now?
Well, my face, hands and feet are tingling, my head is big round and under compression, I can’t think and can see only a tunnel. Other than that, I’m not complaining. I can take it. I can take it.
Dr. Boyd backs off the voltage and I begin returning to normal. Whatever that is! At this point, the process is hastened as he runs through a series of settings that are unpredictable — some better with relief, some worse, some really good.
It’s 9:45 a.m. Dr. Boyd asks me to take my normal first dose of the day. He is pretty excited. I’m playing it with a poker face. But I’m pretty psyched. He sends me off for a cup of coffee and to report back after the meds kick in so we can look for dyskinesia. So I walk down to the elevator, head high and walking perfectly balanced. A completely alien feeling — but I can get used to this!
When I get back, he catches sight of me in the hall and watches me ambulate into the exam room. How are you feeling? Pretty good, says me. He’s pretty excited. As he runs me through the finger-tapping thing, Jean Baker, my friend and colleague from Vermont APDA and chapter and newsletter and everything, pops in for a look. How are you feeling? Pretty damn good! Another hall walk, and when I turn around, Jim and Jean are at the end of the hall, beaming. And I am, too.
Tom was surprised to get a call so soon, but he came over in short order and we headed downtown to Leunig’s for lunch. I had called Suzanne earlier to share the good news, and she encouraged me to go out and do some shopping. Tom gamely walked with me to a J Crew store in the Church Street mall.
That’s where the dyskinesia hit. As I walked away from the counter, my leg felt like it was stuck to the floor. Strange, that’s not dyskinesia, I thought. But it persisted, and soon my arm was having a hard time.
I thought at first that I had turned off the device inadvertently, by walking through a store security magnet. The dyskinesia was very different, qualitatively, and I did not have an access controller (the unit that allows me to turn the IPG on and off). However, a 60-second visit with Jean confirmed that the controller was indeed turned on, and time revealed that the dyskinesia intensity is in direct relationship to medication level.
So that’s the best part of the story so far: Sinemet dosage has been reduced by half; Mirapex by a third; benztropine is eliminated. Still have the arm problem, but gait and posture are still much improved. Maybe part of the arm thing is residual response to the 12 years worth of compensating for the tremor. Time will tell.