S ix years ago on Wednesday December 8, 1993, my second life began to
resolve itself with my pallidtomy, a process that continued with my DBS a
year later on Wednesday December 14, 1994.  I did not realize at the time
that my medical team, Drs. Andres Lozano, Tony Lang & Ron Tasker and Mrs.
Jan Duff, R.N., had exercised a transforming influence on my life.  I did
not know, and still do not, what a profound change they wrought.  I have a
new vocation - easing the burden of having Parkinson's - which has been
tested in the crucible of daily life at home and at the Parkinson Foundation
of Canada and not found wanting, except in its ambition, but "...Ah, but a
man's reach should exceed his grasp, Or what's a heaven for?..."

I want to thank everyone who, knowingly or unknowingly, has supported my
efforts.

I have a favour to ask of the list members.  For the past eleven weeks, I
have posted a chapter from my book, My Second Life: a memoir of my
experience with Parkinson's Disease.  It is finished now.  I would
appreciate as many of you as are able to writing a critique of the book, as
short or long as you wish.  I preparing your critique, you might like to
bear the following questions in mind:

•  As a reader does the book hold your interest?  Do you want to keep
turning the page?  If there are places where you find your interest
flagging, please indicate where and why.
• Are the any medical concepts conveyed clearly and unambiguously?
• In general, are you enthusiastic, warm, lukewarm or cool about the book?

I must ask you to be utterly honest in your opinions.  Do not weaken a
criticism out of a misplaced regard for my feelings.  That renders opinions
useless.

In order not to burden list members with critiques, please send them
off-list to: [log in to unmask]

Thank you for your support

Bill
(56/37/35)



 Chapter 11

 An End and a Beginning


The effect of the second operation, combined with the first, was truly
dramatic and miraculous for me.  People in our neighbourhood whom I didn't
know but who had observed me, stopped me on the street and said "What has
happened to you?  There is such a tremendous change in you!"  I was and am,
to borrow a phrase from C. S. Lewis, "surprised by joy", by the joy of
freedom, freedom to do what I want to do, within reasonable limits.
 The operations were not a cure for my Parkinson's.  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.  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, and even then I could never tell when I would
become completely immobilized.
  I no longer take a cane with me when I leave the house.  Esther is
relieved.  I used to walk with my cane outstretched behind me.  After
catching a young  woman and later a small child between the legs, Esther
would not take her eyes off me while we walked.  The cane was more like a
gelding instrument,  I am now a free man ... well, not really free because I
now have to have my little portable stimulator hooked up all my waking
hours.  It is no larger than a Walkman, but it consumes one 9-volt Duracell
battery every day.
 I am able to live a normal life. I look like a normal person.  I am no
longer the frightening looking person I introduced at the beginning of the
book whose violent shaking alarmed and repelled people.  I no longer feel or
am perceived to be alienated from society. When I get up in the morning I
take our very lively Airedale terrier on a five kilometre walk. I have been
re-certified to drive a car.  I go to meetings, go out to lunch.  We travel.
 For the first summer after the operation, at Blue Sea Lake I prepared for
water sports by buying a waterproof bag to safeguard the pacemaker when I
was sailing or canoeing.  It turned out that the main danger was not getting
it wet, but having it bang around in the sailboat when coming about or
gybing.  I tried, somewhat apprehensively going out without the pacemaker.
To my surprise and delight, I found that, as long as my pills have been
taken on time, doing without a pacemaker is not a problem.  My movements and
agility are not quite as good as with the pacemaker, but are more than
adequate.  On the matter of golf, while I have only played half a dozen
games in my life, I can now drive a ball 75 - 100 yards; the difference is
that the ball often lands in the middle of the fairway instead of everywhere
but.
 Looking back over the operations, I realise that despite the very
legitimate apprehension about a bilateral pallidotomy, it appears that the
mini-pallidotomy and sub-thalamotomy that had to be performed in the second
operation to insert the electrodes had the most beneficial effect and that
the electronic stimulator is, most of the time, the icing on the cake.  I
have gone for most of a morning without medication and just the stimulator.
With the stimulator alone, I am not as well off as with both, but I can
function well enough to take public transit to the hospital for testing.
 The physical and practical improvements are dramatic. Apart from the sheer
pleasure of living close to a normal life, there is the relief of being able
to help Esther. Because of her condition, I had to be mobile if we were to
be able to live our lives together.  This is the great practical benefit.  I
am able to look after the household.  Not only that, we can travel together.
I can get her on a train or plane.


I believe in miracles.  At Easter, 1995, I wrote a poem, Miracles, to try to
set down my feelings about my operations.  It is a sort of postscript to
Lazarus:

M I R A C L E S
A child healed because a prayer has been said
Or a sacrifice offered to a household god
Or because a different doctor is consulted
Is not a miracle.
A child could just as well die from these things.

An apparition can be the result of an altered state of mind
Brought about by pain or hunger or fatigue or mortification.
Or by the magic mushroom or peyote-mescaline.
Not a miracle, just hallucination
Self-induced, deliberate escape

An auto-stigmatizing statue or one that cries
The Lady's tears of pain
Is often a calculated attempt
To deceive the faithful
or ones' self.

Honest piety, judiciously applied to human endeavour
Can produce things that pass human understanding;
But these are not miracles.
For they require a special talent
Like the shaman in The Cunning Man.

Miracles involve perceptions of reality
Different from the everyday interpretation
Of what makes life tick on.
A miracle-worker is not
An ordinary human.

They are well-schooled in their art-form
They aren't ordinary whiz kids.
They dazzle with their insights
Us ordinary folk
Who aren't in their league.


Super-tuned and extra-focussed ears and eyes
Interpreting reality differently
Neurons and receptors arythmically conversing.
Discovering why there is disorder and chaos
Is the miracle.

For they have been there always.
Waiting to be discovered by human senses
They elude the common mind
The idler's tongue
They are not invented

They are the apogee of Creation.
When understood in their fullness
Miracles explain the mysteries
Of the world in human terms
To human beings.


 For that is the special skill of the modern scientist: finely honed
perceptions combined with lateral thinking.  These skills are fired in the
crucible of technology, for these finer perceptions would not be possible
without the benefits of science.  This definition of miracles also frees me
from the doctrinaire position that if it did not happen in the Bible, it is
not part of God's revelation.  It permits -  no, insists - that the insights
of Einstein and Freud be part of God's world.  I believe in miracles because
I have had two miracles worked on me.

The two operations I had were tremendously successful and I get great
satisfaction from writing and speaking about them.  But I know that these
risky medical procedures are only suitable for a small proportion of those
who suffer from Parkinson's, or other chronic neurological conditions. The
neurosurgical/medical team chose me to be their guinea pig, in part because
I was comparatively young, and I was, except for Parkinson's (and that is
quite a big "except from") I was in quite good psychological and physical
health, and had no other chronic medical conditions which could adversely
affect the outcome.
 Not long after my second operation, I saw the results of a another
bilateral pallidotomy which had been done in two separate procedures a year
apart.  The patient, a man in his sixties was a diabetic.  After the second
procedure, he was left with severe gait, cognitive and balance problems.
The tragic experience of this patient is compounded by the agony his family
must endure.  This brings home a truth that Esther always emphasises when
talking to patients and their spouses.   "The patient makes the decision and
has the procedure; the family lives with the consequence."
 Another factor that restricts pallidotomies being used widely for the
treatment of Parkinson's is that these operations require such a high level
of medical and technical skill that it may be unrealistic to propose that
all those thousands of patients in Canada alone who might benefit from the
operations should have them.  However, in the four and a half years since
the second operation my medication costs have been reduced by over $50,000
so there could be an economic argument for the operation.

There is a real sense in which the effects of these operations remains a
mystery.  Medical science knows how lesions affect the brain and how chronic
stimulation affects movement, but as the philosopher John Searle observed,
  As far as we know the relevant processes take place at the micro levels of
synapses, neurons and cell assemblies.  All our conscious life is caused by
these lower level processes, but we have only the foggiest idea of how it
all works.

We know how the motor system works, but we do not know how the
neurobiological processes in the brain cause consciousness.  The answer to
the question of consciousness is tied up with the old philosophical problem
of dualism: the placing of consciousness and other mental phenomena outside
the ordinary world and thus outside the scope of natural science.  Opponents
of this view argue that dualism must be abandoned and we should start with
the assumption that consciousness is an ordinary biological phenomena like
digestion or growth.

The operations that were performed on me are only one approach to treating
of Parkinson's.  In effect, the pallidotomies with deep brain stimulation
are an acknowledgement that a part of the nervous system is irrevocably
broken.  Another treatment approach is along the line of dopamine
replacement.  My only experience of this are the medications Pergolide and
Sinemet CR.  Now, a whole new generation of dopamine agonists is being
developed, and there is great pressure to make them available to patients
before they have been thoroughly tested.  One of these drugs has had to be
removed from the market because of fatal adverse reactions in some patients.
 Foetal transplants have long been the dream of neurologists and
neurosurgeons.  This treatment is an extension of dopamine replacement
therapy.  However, it raises very large practical and ethical questions.  In
order to treat each side of a patient's brain, six or eight voluntarily
aborted six-to eight week old foetuses are needed.  If the this treatment
were to become widely used, the number of foetuses required would give the
most ardent free-choicer pause. In addition, testing the procedure is very
difficult.  Is it proper to undertake a double blind study in which neither
the doctors nor the patients know which patient has received the foetal
cells, when the results from those getting the real thing will only become
evident as much as eighteen months after the operation?.

Much of my time has been spent working with the administration and work of
the Parkinson's Foundation, as well as the peer support programme.  Among
the projects I've been involved in are the growth of the Superwalk, the
initiation and development of the peer support programmes, as well as
sitting on the board and on various committees.  I have also attended
international Parkinson's conferences.  In effect I have become a
professional Parkinsonian.

My neurosurgical experience has been the great adventure of my life. Imagine
the thrill of having your brain operated on twice, each time fully awake.
And the predicted results happened: I have been born again. Not in the sense
of religion, but in being free to move and act.  My life is ahead of me.
 People have said that I am an inspiration to them as well as saying that I
am a hero.  I find these statements profoundly embarrassing, because I have
done nothing that is heroic or inspirational.  I had no choice.  Without the
two operations, I would be spending the rest of my life bedridden in an
institution.

I know that in our family I am the lucky one. Esther's condition has
progressed considerably (in medical terminology) in the seven years since
her diagnosis.  Her gait and balance have deteriorated as a result of two
factors not directly related to Multiple Sclerosis.  In the summer of 1995
she broke her right hip, and there has been a development of chronic pain in
her left shoulder and neck which radiates to her feet and hands. This pain
is so severe as to be debilitating and has rendered her  a semi-invalid.  A
whole arsenal of drug therapy has been tried with only limited success. In
the first place, the so-called pain-killers don't kill pain, they only take
the edge off.  And they have adverse side effects ranging from weight-gain
to worsening co-ordination.  There is the possibility that neuro-surgery
similar to Deep Brain Stimulation could alleviate the pain, although at
present the success rate for this treatment is only about fifty percent.

One morning in May, 1999, our son Howie, who was now twenty-eight, phoned us
from Vancouver where he was studying, to say that his ulcerative colitis was
excruciatingly painful.  We could feel the pain the sound of his voice.  He
had been suffering from this condition for  several years - it was the
consequence of drinking bad water on a canoe trip.  Ulcerative colitis is a
chronic disease of the bowel characterized by sores or ulcers, on the inner
surface of the large intestine which are extremely painful.  Digestion
becomes difficult and there is a lack of control over bowel movements.
These features combined with the medication he was taking having become
toxic had led Howie to becoming less gregarious and somewhat reclusive.
 Howie told us that he had an appointment with his gastroenterologist the
next afternoon.  We urged him not to wait but to go to Emergency at once.
He did, and that afternoon he was in St. Paul's Hospital in Vancouver with
emergency surgery, an ileostomy, scheduled for the next evening. In the end
four feet - about one and a quarter metres of Howie's large intestine, the
whole thing would be removed.
 I got the first available flight to Vancouver to be with Howie.  As I
walked into his hospital at noon the day after his operation he was asleep.
I said, "Howie, it's Dad. I'm here." He woke up, surprised to see me.  Tears
welled up in my eyes as we hugged each other.  I felt very vulnerable.
 Over the next week as we talked, I was thrilled by Howie's positive
attitude.  One statement of his hit home. "I'm regaining control of my
life!"
 The true dread of everyone who has a chronic disease is the lack of control
they have over their life.  Where once our lives had been run by the
diseases we had, first I and then Howie had had leading edge technology
surgery.  We have been doubly blessed with a second chance at life.  What we
make of it will determine if we are worthy.

With chronic disease you have to be angry enough with the disease that you
say, "I will not permit this condition to run my life any more"  But you
must not only have been diagnosed with a chronic illness, you must
experience it yourself for a period of time - for everyone's experience is
different.  As Nietzsche wrote,
 He who seeth the abyss, but with the eagle's eye - he who with the eagle's
talons graspeth the abyss: he hath courage
You must go to the edge of the abyss, look in and decide that this is not
the future you want.  In T. S. Eliot's play Murder in the Cathedral, the
chorus says,
  We are afraid in a fear which we cannot know, which we cannot face which
none understands, And our hearts are torn from us, our brains unskinned like
the layers of an onion, ourselves are lost in a final fear which none
understands.

and that surely is the point.  No one who has seen the bottom of the abyss
wants to be there.  Hope must never be abandoned.