Almost four hours into his Deep Brain Stimulation app calibration Dad texted us:
Almost done. Exhausted but elated. Am texting this with steady hands.
We all got a little emotional, to tell the truth. Dad’s DBS surgery was just over a month ago, and he’s been healing ridiculously well. Every single wound site is essentially invisible, with no obvious scarring or trauma, and we’ve all been kind of trying to imagine just how different life was going to be for him when he returned home from his calibrations.
When he arrived home, he said, sort of bemused, “All I did was sit there for four hours saying, “Mary had a little lamb,” and bringing a cup or a biscuit to my mouth over and over again, but it was really intense!” But then, four hours of repetitive motion is pretty damn intense even if nobody is running itty bitty electrical currents through your brain to see how they affect your motion, and that, of course, is exactly what the team was doing with him for all those hours.
Although apparently pretty well the entire surgical team stopped by to admire their handiwork, there was a smaller team on hand for the calibration process: the doctor, the nurse who held Dad’s hand through the surgery, and the software representative for the company that developed this particular DBS app—remember that Dad is only the second person in the world to have had this specific surgery, which makes him an exceptionally interesting test subject.
It also means there’s no template at all for these calibrations, and while he imagines that everyone goes through an equally intense and careful process for DBS calibration, we expect the work they’re doing with him will become part of their template, which is pretty amazing.
The nurse, Dad said, had innumerable sheets of paper with circles drawn on them, and every time they made an adjustment, she would draw three dots on the circles, representing the adjustment. From Dad’s description, I ended up with the impression that their adjustments weren’t just to the (very, very tiny) amount of electricity they were running through the wires—which, if you’ll remember from the last write-up, are two very fine wires with three very small prongs on the end of each, the prongs being meant to enhance the quality and strength of the reconnection of the brain’s electrical current in a way that previous, single-wire, no-prong DBS surgeries couldn’t match—but that the prongs themselves may even have been microscopically adjusted via the app. I don’t know if that’s accurate—the prongs may very well not move, and Dad will ask about it on his next visit—but the mapping and electrical current information were done with extreme focus and precision.
He was asked to repeat “Mary had a little lamb” endlessly because its a phrase that can be easily slurred, and evidently—although the doctors were straight-up about saying they had no idea why—the part of the brain they stimulate for DBS also affects the speech centre, and so if they turn the power up too high, patients begin to slur their words. Furthermore, the doctors said, a common side effect of DBS is that as recipients become increasingly tired, they’re increasingly likely to slur their words. Dad, telling us this barely 24 hours after the calibration (after a spectacularly long day of calibrating and travel), said he felt, in fact, like he was slurring a little, although we thought he just sounded very tired, rather than slurry.
Relatedly, at one point during the calibration when they’d turned the power up higher than before, Dad reported becoming very, very tired, and saying, “I’m sorry, I’m exhausted, we’ve got to stop.” The doctor said, “Oh! We turned it up too much, sorry!” and turned it down again—and Dad’s tiredness went away immediately. It’s another known effect; that part of the brain also evidently has some relation to the sleep centre, but they really just don’t know how it’s all connected, and said as much to Dad more than once.
Similarly, another side effect they know to look for is an involuntary lip curl! Dad said that even before he knew he was doing it, the doctor said words to the effect of, “There it is, turn it down,” and then Dad could feel that his lip was beginning to curl. He said the doctor watched him with absolutely tremendous intensity—and that he and the nurse seemed to be having a positively fantastic time doing this work.
Dad himself found it as thrilling as the surgery itself, and in its way completely bizarre, as his hands involuntarily grew steadier and steadier while they adjusted the voltage to get the most reduction in his tremor. This was the inital calibration; he’ll go back in three months to address refinements and also what amounts to gross motor control, including things like his gait and posture. In the meantime, his app allows him to fine-tune the current, turning it up or down a little (very little, we’re talking millijoules here) in order to refine the tremor’s effect, which at the moment is reduced to an occasional “bobble,” as Dad calls them, when he’s lifting, say, a water glass to his mouth; he might “bobble” as it reaches his lips, or he might not, and adjusting the app can help with that.
The doctor told him he should take up Tai Chi, and when he said that to us, I said, “And you can do the hand gestures now,” and did a wax-on, wax-off motion.
So did Dad, with both hands, with complete control.
It’s almost impossible to convey how incredible it is to see him doing that. To see him hold both his hands out and for them to just sit there, rock steady, in the air. To watch him pick up a cup of water—a task he’s got to re-learn to do with one hand, because he’s been using two in order to obtain some degree of control over his tremor—and drink it; to watch him drink part of the glass of water and then lower it, then to bring it back and drink more, instead of drinking it all at one go, because with the tremor, the repetitive motion meant he wouldn’t be able to do it a second time for a second sip, so he had to drain the glass all at once.
He’s a very funny man, so when he remembers to use only one hand to hold the glass, he does so with an extremely smug, pleased, prissy expression of “Look at me, drinking with one hand just like it’s nothing! Oh! Did you notice me drinking with one hand just like it’s nothing? Well, it’s nothing, I assure you!”
His posture and gait improved literally overnight, and even more within 48 hours of the calibration being completed. Today, after turning up the current for the left side of his body by .005%, he noticed that his walk became much more solid, with no more swaying and he could walk in a straight line, which was a completely unexpected bonus from his point of view.
And that’s without any kind of physical therapy, which he’s interested in pursuing, because it’s been fifteen years of increasing loss of control over his hands (especially his right hand), and it’s hard to even know what he’s learned to do to compensate for the tremor in that time. It’s a lot of learning curve and it’s going to be a lot of un-learning, but the difference is already astounding.
The morning after the calibration, Mom said to him, “Can you write?”
Dad hadn’t tried yet, so she handed him a notepad and paper, and he wrote, in smaller, tidier letters than he has been able to do in at least a decade, what sums up this whole incredible journey: “I can write—but this is going to take some practice.”
(x-posted from The Essential Kit)