My World of Parkinsonian Delights

More Machine than Man!

More machine than man?  Nah.  But it was three years ago yesterday that I first had my DBS neurostimulators turned on.  Here’s how I tell the story in my book (you knew I had a book, right?)No Doorway Wide Enough.

Day Trip for Programming

July 10, 2007

I overslept this morning.  Got home from Nashville at around 8:15, went to bed shortly after 9, got up at 4:45 a.m.  I’m usually up by 4.  It’s an occupational hazard.  Now that I’m taking the train every day, I gotta be at the train station by 5:51 in order to get to work at or near 7 a.m.  No time for coffee this morning, and that probably has more to do with my sense of ennui than does the fact that my Deep Brain Stimulation is turned on, programmed and functioning.

The flight to Nashville was uneventful, except for the young father and his two darling, precocious little treasures who sat in the seats in front of me.  I’m guessing they were around 2 and 4 respectively and neither child has yet developed an “inside voice.”  They weren’t crying or fussy.  But they SQUEALED the entire flight.

“Oooooh, Daddy!  Lookit this PICTURE, Daddy!  Lookit the PICTURE of the KITTEN, Daddy!  Lookit!  Lookit!  Awwwwww!  Lookit the KITTEN, Daddy!”


Daddy was reading a magazine and only nodded the most perfunctory acknowledgment to his daughters and the picture of the kitten.

Grabbed a cab at the airport with a garrulous country boy driver named “Steve” and we chatted like chums all the way to Vanderbilt’s Medical Center North.  I made my way to the 3rd floor neurology department, checked in, took a seat, and waited.

I resolved that I would try to be a better, more communicative patient during this session than I was during the initial brain surgery.  For instance, as I think back, when I told Dr. Charles that I was feeling, “nausea, but that’s not the right word for it” during the test stimulation, I felt like I wasn’t really communicating the effect the stimulation was having.

It controls the stimulation. But can you change the TV channel with it? No. You can't.

Chandler called my name and led me back to an examining room, where Dr. Charles was waiting.  I brought along my Access Review Model 7438 Therapy Controller (It looks like a garage door opener, and it will be my faithful friend and constant companion for my remaining days) and hopped onto the table at Dr. Charles behest.

“Remember when I said during the test stimulation that one of the side effects was nausea, but that wasn’t really the word for it,” I said without waiting to be asked.  “I’ve been thinking about it, and in retrospect I think the best way to describe that feeling would be just a general feeling that something ‘wasn’t quite right.’”

Dr. Charles frowned and looked at Chandler.

“Scratch that paper we were writing on DBS and Nausea,” he said grimly.  Then he smiled.

Dr. Charles produced a controller that made my little garage door opener look puny by comparison.  He explained the programming process and said that his gadget would be able to tell him if the leads were situated correctly, and if there were any problems with the hardware.  They were, and there weren’t.

The X-Ray at the top of the page IS me. This one is NOT me.

Each lead has four electrodes.  It’s necessary to test each of the electrodes for efficacy and side effects.  That’s what we did.  First with the left brain, since my right side is the one most affected by PD symptoms.  The first electrode was able to reduce my symptoms somewhat.  Then the side effects kicked in with a buzzing feeling in my right hand and foot, and double vision as my right eye went off its axis.  The second electrode eliminated my PD symptoms completely and the worst side effects consisted of a buzzing in my fingers, foot and lips and tongue.  Electrode three didn’t score as well, neither did electrode four.

He put the control magnet on my right-sided neurostimulator and repeated the procedure.  The side effects weren’t as pronounced, and it seemed as if the second electrode was the “money” electrode on that side as well.

When we were finished, Dr. Charles said the session was a great success.  He turned on both neurostimulators and put them at a low setting, directing me to continue taking my Stalevo as before.  I’ll go back in two months for another programming session to get the voltage kicked up a little and that is when we’ll start drawing back on my PD medications.

Dr. Charles had a flight out of Nashville International as well that afternoon and offered me a lift to the airport, which I gladly accepted.  We talked of many things, including his idea for a web forum of some sort for those of us in this study to use to stay in touch with each other, to touch base on therapies, and to share the latest news on the study.  I said I’d be glad to spearhead such a thing.

On the subject of “other people in the trial,” Dr. Charles shared an experience that happened during a recent surgery with another of the DBS-randomized participants.  Actually, it’s something that didn’t happen, but might have had not “better sense” ruled the day.  One of the patients – he didn’t say who, since we all (technically) don’t know each other as we maintain our anonymity – mentioned to him during a subsequent programming session that he had entertained the idea of playing a bit of a joke on the good doctor during his DBS surgery – specifically during the electrode programming session.

“He said, ‘I was gonna pretend to be paralyzed on one side,’” Dr. Charles said.

“Well THAT would have been a good idea,” I said.  “Very clever!  Very funny!  And frankly, I entertained the same idea once… for about a half-second.  Then I thought that you guys might have a syringe full of ‘something’ that you would immediately inject into the IV line that might save my life if I were REALLY having a stroke, but might otherwise kill me if I were not.  And knowing that my self-satisfied chuckling might be the last sound I ever heard, I decided against playing that particular joke on you.”

“What is it with you guys?” Dr. Charles said, shaking his head.  “You’re laying there, on the table, your skulls open, having brain surgery, and you’re thinking of jokes to play.”

“Gotta do something,” I said with a shrug.

He dropped me off at the door leading to the Southwest Airlines portion of the terminal, I thanked him for the ride and went in.

The flight home was uneventful, save for a young girl traveling by herself, taking her first plane trip to see her grandmother in Albany.  She kept up a steady litany of questions to her seat mate and harried flight attendants.

“How can you tell if a plane is going to crash?”

“Does lightning strike airplanes?”

“Is there a ramp at the end of the runway?”

I was grateful when the flight attendant said we could use approved portable electronic devices.  My iPod drowned out the nervous child for the remainder of the flight.  So did a double scotch on the rocks.

I was celebrating.  I made it through the DBS procedure and was sailing down the downhill slope.  No more procedures until September.

Life is very, very good.

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