Chapter Six Part Two


 In the month following the telephone diagnosis, Esther had increasing
difficulty walking. She got progressively worse as Christmas approached. We
were both very concerned. Parkinson's had advanced a fair bit in me, to the
extent that I couldn't walk without a cane for several hours each day, and
sometimes not even then. Just before Christmas, when the children would be
coming home, Esther called Dr. MacDonald's office to tell him of her
inability to walk. She was concerned about the childrens' reaction to coming
home and finding that neither parent was mobile. Over the telephone,
Prednisone was prescribed. It is a steroid drug which is supposed to
moderate inflammation. It provided some relief, but produced internal
bleeding as a side effect. Over the phone, another drug was prescribed to
deal with the internal bleeding. Not for the first time, I was very
concerned with the quality of medical care Esther was receiving.
 In January, 1993, Esther saw Dr. Trevor Gray. He had been highly
recommended by the friend whose wife had died of MS in 1981. He confirmed
the diagnosis, although with less enthusiasm than Dr. MacDonald had done. As
Esther recovered from the attack of paraplegia, which we wanted to treat as
an exception, we both tried to imagine how she could adjust to living with
MS. I felt she would have to deliberately conserve her energy and lead a
quieter life. If she adopted a routine and followed it, it could make a real
difference. But that was not easy to do as a School Trustee.
 She had taken a leave of absence from the middle of December until the end
of January to get over the paraplegia and to try to get used to the idea of
having MS as a life-long companion. While I tried to be supportive, my
Parkinson's was progressing fairly quickly, so I wound up being resentful
that I had to share the limelight of sympathy and understanding. I am
ashamed now to realise that it was quite a long time, and a change in my own
circumstances, before I really began caring for Esther properly. I was very
good at laying down regimes for Esther to conserve herself that I now have
to acknowledge, were really designed to help her care for me.
 At my next appointment with Dr. Lang, the first thing he said after hearing
the news of Esther's diagnosis was a compassionate, "We have a duty to keep
you mobile as long as possible." He went on to say that there were a number
of options for me, including surgery.
 It was a positive approach that I appreciated, but I was not emotionally
ready for surgery yet. Was he out of his mind? There was no way I was going
to let anyone muck around in my brain. I was beginning to think that there
actually was some good stuff up there. After all, my head was a size eight
and a quarter and I had always had trouble getting a hat to fit. And
everyone knew of someone, or at least knew a story of someone, who had been
totally screwed up by neurosurgeons.
 One thing I was not being considered for was the then current great hope
for some Parkinsonians, a fetal transplant. The theory was that adrenal
glands from aborted human fetuses could be placed in the brain, implanted,
and that they would grow and replace the dead dopamine cells in the brain.
This raised difficult moral and practical problems regarding the
availability of fetuses. The spectre of "fetal harvest" has led to
fascinating research on porcine fetuses, growth factors, and several other
innovative approaches to what is essentially a surgical approach to dopamine
replacement therapy. While some progress has been made on the technology of
transplantation, the fact remains that fetal transplants are significantly
less successful in percentage terms than surgery involving lesions of brain
tissue or brain electrical circuitry.
 After Esther and I began to adjust to the news of her diagnosis, we
realised that we had to face the question of how and where we should live.
We had been in our house on Belsize Drive in North Toronto for sixteen
years, and we liked it. Our preference was to expand it so that Esther and I
and the children who were now fully grown, could continue to live there and
to renovate it so that Esther with her MS and I with my Parkinson's could
more easily move around in it. The two could combine in an awesome synergy
if, for example, Esther had a period when she needed assistance walking
which coincided with one of the "off" periods for my medications; we would
both be immobilized and neither able to help the other. We explained this to
John Vanstone, our friend and architect. I strongly resisted the idea of
"grab-rails", saying that I did not need them, but I realised that at least
we had to make the house barrier free, that is, fully accessible to a
disabled person, if we were to continue living there.  John's first design
seemed too expensive, so the summer of 1992 was spent looking at
condominiums, duplexes and the resale market in houses. Those alternatives
were no better, so we were back to considering a renovation.
 In the previous two years, my mother had died and I had settled her estate,
and my two aunts had died leaving me William Boyne's literary estate and the
massive collection of prints and engravings that he had accumulated. As a
result, I inherited bequests which eased our financial position, enabling us
to proceed with the renovation.
 Our first idea had been that the house would be extended by eight feet,
which would enhance the kitchen and dining room and give more space on the
second floor. We wound up gutting the whole house - the living room was the
only room that wasn't structurally altered - and added approximately 1,000
square feet. We extended the back of the house on the basement, first and
second floors. We went far beyond just making it barrier-free. It was to be
a total renovation. We had to move out of the house for ten weeks in
December, January and February while the construction was at its busiest and
most frantic.
 On a friend's advice we took the kitchen, main floor powder room and
upstairs bathroom away from our contractor and gave the job to Chris and
Gord Smith. They are artists - Gord is one of Canada's leading sculptors and
Chris is involved in installation art - but they are talented artisans as
well. The results were spectacular. All three rooms are barrier-free, yet
you would not know it to look at them.
 One thing that Esther's diagnosis had convinced us to do was to install an
elevator running from the basement to the second floor, with stops at every
level, including the driveway. Dr. Polak convinced us. "What would happen to
your mobility if you sprained or broke an ankle? You would have a big
problem. Put the elevator in."
 We moved back into the house about the middle of February.
One of the first things we noticed was that one of the small drawers in
Esther's dresser was missing. We then found that all of her good jewellery
was missing. It was quite old and valuable, most of it handed down to us
from either her family or mine. We then realized that the drawer had been
stolen too - to carry the jewellery in. And a telephone and a new Fax
machine not even out of its box.
  The police came; then the insurance adjuster and finally the cheque which
inevitably only covered a fraction of the loss. Over the course of the next
two years we discovered, indeed still are discovering, the true extent of
what was stolen. We have concluded that the robbery was not a quick "grab
and run"; rather it was well-organized over time. In our innocence, we
trusted everyone, from family to casual workers to our contractor and his
crew. We do not know to this day who was responsible for the robbery.
 In retrospect, we had picked the worst time to renovate imaginable. Both
Esther and I had a total lack of energy, so things were not packed away as
they should have been. Fortunately, our silver was stored at a friend's
house. We could not have been thinking very clearly or we would have emptied
the house and put everything in storage. But we didn't.
 The stress of the renovation was ongoing, for the painter and landscapers
weren't gone until mid-June. It is one thing to plan a renovation; it is
quite another to make it work. We set about that by scouring design
magazines and hiring a young interior designer to give us ideas. I took
charge of the design because Esther was so depressed and preoccupied by MS.
Actually, she probably realized how much of our capital was being consumed
by the renovation.
 Fast on the heels of discovering the robbery, we decided to make a big
change in our life. We sold our car. Earlier in 1992, I had begun to have
the feeling that my driving was degenerating. Several people had told
Esther, under a cloak of anonymity, that I should stop driving. I paid
little heed to them, partly because I wanted to keep on driving. Only one
friend, Bruce Marshall, had the courage to risk our friendship and tell me
directly that I should not drive. "You are a menace on the road, Bill. For
your own safety and that of others, you have got to stop driving." I was
initially annoyed with him for saying that, but I slowly appreciated the his
open directness. He was right. My decision was not even based on accidents,
although there had been a few small ones. I simply decided not to drive any
more because, even in my eyes, I was no longer safe on the road.
 Now, for driving purposes, Esther was declared blind. She had seen her eye
doctor and was shocked when he said, "Mrs. Harshaw, I must ask you to turn
in your driver's licence." While Esther had not been driving for some time,
the shock of having her licence actually taken away was immense.
 We had to learn to live with and, as best we could, enjoy the consequences
of our limitations. Shannon Graham and Dianne Vanstone, the wives of my
friends Tony and John started taking me shopping - to the St. Lawrence
Market, the Price Club, Loblaws, and so on. It was fun and I remarked at
Esther's 1993 birthday party that I saw more of their wives than they did!
 Learning to accept the help of friends was one of the lessons we had to
learn. Learning not to depend on that help and not to take it for granted
was another. I came to realize that I was using my friends as my personal
support group. I hadn't gone to them and asked, "will you help me cope with
Parkinson's by being my support group?" They just offered of their own
accord: Stephen Booth, Ian Hamilton, Howard Shill, Tony Graham and a number
of others.  What I did not think about at that time was that there are many
Parkinsonians who do not have a supportive family or group of friends.
 During the most intense period of the renovation, from November through
February, we had moved out of the house and into the Royal York Hotel. It
might seem a lavish alternative but in fact it was practical - the hotel
offered us an attractive rate, and we needed the services it could provide.
My Parkinson's had been progressing rapidly, with violently contrasting
moments of akinesia and dyskinesia depending on whether my meds were on or
off. Esther's MS had led to an attack of paraplegia - she was virtually
incapable of walking. At Christmas, Howie and Emily, back from their
schools, stayed at the hotel as well and saw us at our worst. A cousin of
Esther's, Nell West, also stayed with us over Christmas.
 One evening, when neither Esther nor I could walk very well, we were on our
way to dinner in the hotel dining room. Our movement was slow and
hesitating. We must have looked like old people in young bodies.  Esther
could be pulled forward; sometimes when I couldn't walk forward I could walk
backwards. I put my arms around Esther, and said in my best Yul Brynner
voice, "Shall we dance?" And dance we did, in a fashion, to the imaginary
orchestra playing the Rogers and Hammerstein tune from The King and I until
we arrived at our table to the bemused looks of patrons and restaurant
staff. Much to my surprise and embarrassment, they applauded us, not because
we looked like Fred Astaire and Ginger Rogers, but because we got there on
our own