copyright 1999 the harfolk press

MY SECOND LIFE

Chapter Ten

Part 3 of 3

Doing the Other Side



On December 24 I went home for Christmas, determined to enjoy the season
with Esther, Howard and Emily and our friends.
That evening, while watching TV, I had a brain seizure, akin to a grand mal
epileptic seizure. It lasted less than a minute, but I was left unconscious
for hours. Nell West, Esther's cousin who is a nurse with the V.O.N., and
who was staying with us, did all the right things, while my daughter Emily
called 911. In no time, police car, fire department rescue truck and
ambulance were at our door and I was rushed to the Western.
  Some friends had been dropping off a gift at our house on their way to the
midnight service at Christ Church Deer Park when all the emergency vehicles
were in front of our house. Word of my seizure travelled quickly during the
service. Dozens of concerned friends called to see what the problem was.
 Esther, Howie, Emily and Nell had followed me down to the hospital in
Nell's car.  Fortunately, when I was being admitted, a doctor from the
neurology department who happened to be familiar with my case was on duty.
He made sure that the Emergency Room staff were aware that I was having
post-operative problems, (no doubt compounded by being too active), rather
thinking I was suffering from epilepsy.
  Beyond the effect of the seizure on me, the major concern was whether
anything had happened to the electrodes. The doctors were able to establish
that nothing had gone wrong. I was still unconscious, but the doctors
decided that my condition was stable. Unknown to me, in the Emergency Room
Emily held my hand constantly. Everyone was exhausted and Esther eventually
persuaded the rest of the family that there was nothing more they could do
for me and they all left for home. Once there, they opened their Christmas
stockings before they went to bed; they weren't expecting me home for a few
days.

I don't know what time I woke up. No, that is incorrect. The right words are
regained consciousness. I think it was late morning, and Howie was by my
side.  "Hi, what am I doing here? I left this bloody place. Why am I back
here?" I had no idea of what had happened to me, no memory of my seizure. In
fact I had no memory of what I was doing at the time. I have permanent
amnesia of the moment leading up to the seizure.
 I wanted to get up from my hospital bed, but Howie told me I must not. I
did nonetheless, and fell a couple of times.
 "Under no circumstances will you tell the nurses or doctors that I've
fallen", I said to Howard. "If they found out, I'd never get out of this
godforsaken place"
 Poor Howie was torn. Esther had said to him, "Your father is to stay in the
hospital as long as is necessary."
 A resident doctor told me that I had had a "neurological incident", and
would have to be very careful and quiet for some time. I was released about
noon on Christmas day with a prescription for a drug that should prevent
future seizures.  Howie drove me home.
 As I walked through the front door, the first thing I said was "what about
the scrambled eggs and smoked salmon we always have for Christmas
breakfast?" Esther, Nell and Emily greeted me with relief. Then I sprung
into action, completely ignoring the advice the doctors at the Western had
given me about taking it easy.
 Esther and Shannon Graham had predicted that something like this might
happen, so they each had a turkey; only the vegetables had to be divvied up
for our separate Christmas dinners. We had a post-Christmas dinner with them
on the 28th and went to a large party with the Pearces, Vanstones and
Patersons on the 29th.
 In the following couple of weeks, I had a serious depression. How
long-lived would the traumatic side-effects last, or would they be
permanent? Why was there no immediate benefit as there was in the first
operation? Had the surgeons screwed up? There had been no pre-surgical
counselling on any of my post-surgical problems. The discussions I had had
with the doctors had been focused on the "big" things that could have gone
wrong: rupturing a blood vessel, cognitive impairment, vision problems and
speech deterioration.
 However, within a month, the signs of post-surgical trauma were gone, the
benefits of the direct contact with the buried electronic probes continued
and I was a happy camper again.
 On February 5, I went back to the Western for a week of
electrophysiological tests to determine the appropriate settings for the
pacemaker that was to be connected to the electrodes that were implanted in
December. For the entire period, I was taken off my medication to enable the
testers to determine the effect of stimulation in isolation. This reduced my
mobility, but not nearly as much as I expected. In fact, to my surprise, I
found I was reasonably mobile, much more so than I had been before the
operation when my meds were "off".
 First, the wires which had been buried on December 23rd had to be bared.
The operation was a simple one, but inevitably accompanied by a good deal of
anxiety.
 Once the wires were bared, initial tests made by Dr. Ashby determined that
the reduced swelling in my brain made a significant difference to the
responsiveness of the sub-thalamic nucleus and the globus pallidus. This
good news resulted in my feeling a bit euphoric at the end of the first day.
 There were two electrodes to be tested for my response to stimulation. In
the initial testing by Dr. Ashby in December immediately after the
operation, I was much more responsive to the subthalamic nucleus electrode.
This time around, I was too responsive for the stimulator: at very low
levels of stimulation, a 0.1 volt difference in amplitude or 10 Hertz in
frequency was enough to induce a quite painful contraction on the right side
of my body. Hence, the neurologist and neurosurgeons decided not to connect
the STN electrode, neither would they remove it; doing that would risk
moving the brain cells in the GPI.[CHECK]
 The rest of the week in hospital was lonely, tiring, and often frustrating.
Lonely because Esther, with her MS, could not easily come down to the
hospital more than once or twice. Howie and Emily came down almost every day
and I loved seeing them and also the friends who visited. But they could not
replace Esther whom I missed terribly.
 Tiring because with each of the eighteen settings of the GPI electrode, the
voltage wold start at a low level, two volts, increasing by half a volt with
each iteration, holding frequency and pulse width constant. Then voltage was
held constant, and either frequency or pulse width varied. That meant a
minimum of one hundred separate settings. With each setting, Nestor Galvez,
the Clinical Fellow who was the testing neurologist, and the nurse who was
doing the scoring, would put me through my paces on the Unified Parkinson's
Disease Rating Scale, testing for rigidity, flexibility, speech, mobility
and gait and balance among others, to measure the effects of stimulation.
 Frustrating because for 90% of the week, up to Friday afternoon, the
stimulator was not producing any noticeable effect. I felt no improvement
when it was turned on.
 I was bound and determined that the stimulation was going to succeed. On
Friday afternoon, when the last settings were tried, they worked, or at
least I thought they did. Nestor disagreed. He said, "Bill, there is not
enough difference to warrant permanent stimulation. I am going to recommend
to Dr. Lang and Dr. Lozano that we not proceed with implanting the
receiver - there will be no permanent stimulation."
 I was crushed. Instant depression. All that I had put up with and endured
up to that point seemed to be for nothing.
 It was a tough call that Nestor made because there were a lot of people at
the hospital who were hoping that stimulation would be successful, in
particular the team of Lang, Lozano, Tasker and Jan Duff. But Dr. Galvez
called it as he saw it.
 Dr. Lozano came to my bedside at about 6:30 Friday evening with his
neurosurgical fellow to give me the bad news.
 "But Andres, it works!" I argued.
 "That's not what Dr. Galvez says."
 "I felt the difference. In the last setting we tried."
 "Prove it," said Lozano, sceptically. "What setting were you on?"
 "Two negative and three positive at one hundred eighty hertz and a pulse
width of one hundred micro seconds."
 Lozano hooked me up, using a frequency of 450 hertz because Dr. Ashby's
previous work suggested a higher frequency might produce better results.
 Like Lazarus, I walked, first in my hospital room, then in the corridor.
Surprised disbelief replaced the sad look on Andres' face.
 "Let's see if you can make it to Dr. Lang's office."
 I was excited. The bloody thing was working! I put on my dressing gown and
slippers and walked. Past the nursing station, then to the central corridor
in the hospital. I was across the long passageway between two of the
hospital buildings. Then into an elevator, up six floors to Dr. Lang's
office. With just the stimulator on.
 "Pretty convincing," said Lozano, enthusiastically.
 Determination counts. If I had just meekly accepted the first conclusion,
the doctors would have abandoned the attempt at electronic deep brain
stimulation and I would not have experienced the full benefit of the
operation.
 As it was, during the post-operative testing, I was off my medications
totally for four days - longer than I could have previously imagined
possible. The remarkable thing was that I was on the verge of being "on"
without any medication at all. This was consequence of the brain cells being
moved when the probes were being inserted and is a lasting benefit of the
operation.
 The end of testing was in sight, but it would not be reached until the
pacemaker was successfully implanted and operational. The testing and
waiting ... and testing ... and waiting ... were tedious and frustrating.
There are pluses and minuses to being to being a medical first. On the one
hand there is the excitement of being a pioneer; on the other is the time it
takes to make sure that everything is being done properly. On that the
medical team would not compromise, nor should they. Too much was at stake.
 Because Deep Brain Stimulation was a new technique there was no standard
issue electronic pacemaker for me to use. Pacemaker technology was
originally developed to deal with hearts that were arrythmic; consequently
the fully implantable models have the limitations of being designed for
cardiac purposes - for instance the maximum frequency is 180 hertz. I would
need at least 220 hertz with a pulse width of 200 milliseconds [check this]
Medtronic, Inc., a leading supplier, has adapted the cardiac technology to
deal with neurological problems such as intractable pain and
Parkinson's-related problems. Medtronic's ingenious interim solution was to
develop an external transmitter which has an antenna placed directly over a
receiver implanted under the collarbone. The receiver then transmits the
stimulation via wires tunnelled down the side of the neck from the
electrodes at the top of the head.
 The system was hooked up on March 3, 1995. Since that day, my life has been
transformed for a second time. I am not cured, that is not possible yet. But
the worst of my symptoms are under control. My Parkinsonian mask is gone, my
arms swing naturally when I walk and my walking is vastly improved. I have
been recertified to drive a car. On the minus side, my speech is a bit
worse, my handwriting is hopeless and I tire more easily. When I am
overtired, my speech becomes unintelligible, mobility deteriorates and
co-ordination can be a real problem. That's the challenge: to know when to
stop, and then to stop.
 I still take 4 Sinemet CRs per day, and I try to take them on time. Before
my first operation I was taking 14 of those blessed pills each day, one
every two and half hours.
 I am able to live a normal life.

5862 words

Thursday, April 15, 1999 alternate ending

 The system was hooked up on March 3, 1995. Since that day, my life has been
transformed for a second time.