This work is copyrighted by my business name, The Harfolk Press.  Apart
from one copy for personal use, please do not make copies. There are just
two more chapters until the book is finished.  At that time, December 6,
1999, I would appreciate any commments or criticism any of my fellow PWPs
might like to offer.

MY SECOND LIFE

Chapter 9
A SPECIAL KIND OF SUPPORT

I was euphoric during the first few weeks after the operation, but I
gradually realized that only the right side of my body had been effected.
This was to be expected since it was the left side of my brain that had been
treated. The right side of my body, particularly my leg, was still very much
subject to my medications going "off", sometimes in the most unpredictable
ways.
 In spite of this daily handicap, I wanted to enjoy the freedom the
operation had given me and I didn't mind taking risks doing it. There were
times, glorious times, through the winter and spring of 1994, when my meds
were working as they should. I went cross-country skiing for the first time
in several years. For my first ski excursion we went to a fairly remote
area. If my meds had gone off unexpectedly I would have been stuck there and
we would have had real difficulty getting me back to the car, and if they
had gone off as I was running downhill I could have hurt myself badly. But
these were a chances I was prepared to take.
 The following summer, I played tennis for the first time in five years,
wearing out one of Esther's nieces and her husband with my enthusiasm, if
not my skill. Again, if my meds had gone off when I was in mid-run for a
ball I could have had a bad accident, but it didn't happen.
 That same summer I delivered two sermons at our church, Christ Church, Deer
Park. Perhaps, for some people, this brought to mind Samuel Johnson's no
longer politically correct comment concluding "...It is not done well, but
you are surprised to find it done at all." I was surprised that I could do
it, but delighted as well.

In the months following my operation I began taking an
increasingly active part in the Parkinson's Foundation. When I had first
been diagnosed with Parkinson's back in 1982, I had responded to the
condition with denial and fatalism, and had avoided the Foundation with its
do-gooding reputation. Esther had taken a more positive approach, become
involved, and used the excellent information service to educate herself
about Parkinson's, and she had supported the Foundation in some of its
fund-raising activities.
 The Parkinson Foundation of Canada is the principal organization in Canada
representing the interests of people with Parkinson's. Together with
affiliated organizations in British Columbia, Alberta and the National
Capital Region, it is a national network. The Foundation's head office is in
Toronto. There are regional offices in St. John's for Newfoundland and
Labrador, Halifax for the maritime Provinces, Montreal for Quebec, Toronto
for Central Ontario and London for Southwestern Ontario which serve the
requirements of the local chapters.
 The Central Ontario Region is the administrative arm of the Foundation
serving the Toronto Chapter, the largest and most active in the Foundation.
Under the leadership of an executive director, staff services are provided
to the chapters and support groups.
 My own first connection with the Foundation had ended in disappointment -
the cookbook I had written in 1988, which I believed could be a useful
fund-raiser for the Foundation, had been declined - and, in effect, I went
away mad. I stayed away until the winter of 1991-92 when Esther worked on a
fund raising event. I helped her, and began to see the value, even the fun,
of it. The Toronto chapter of the foundation had a newsletter. I thought
that with my experience writing for Seven Days magazine I had something to
offer, and in the spring of 1992 I joined the executive committee of the
Toronto chapter and became editor of the newsletter.
 That I knew little about the Chapter and less about the Foundation did not
deter me; it probably made me keener! I didn't just edit the newsletter. I
had changed its name, wrote most of the articles, and what I didn't write,
rewrote. I was sure my style and presentation was better than anyone else's.
I edited the newsletter as though I was running my own Time magazine. The
chapter president and the former editor checked my first issue for accuracy,
but they did not realise the extent of my editorial activities.
 When the newsletter appeared, I felt pleased with my efforts, but it
produced a major crisis. I had failed to grasp that the newsletter was a
cooperative effort, and that, like other aspects of volunteer work for the
Foundation, the hard work of other volunteers had to be acknowledged and
respected.
 The Executive Director of the Foundation called me into her office and gave
me a terrible dressing down. It was so devastating that I shook for the rest
of the day, a Parkinsonian reaction to stress. What she said was correct,
but she was ruthless. Subsequently, there was a special meeting of the
Chapter Executive at which an editorial committee was struck to review each
issue prior to publication. That constraint was more than my pride would
allow and I decided to resign. It was probably just as well, for I had more
than enough to think about. Esther had just been diagnosed with Multiple
Sclerosis, I wanted to complete my biography of Howard Clark and the major
renovation of our house was about to begin. Joan Prior, the new Chapter
President, accepted my resignation and graciously said that I would be
welcome back on the Executive any time.
 We had undertaken the renovation of our house so that Esther, with MS, and
I, with Parkinson's, could continue to live there comfortably and safely. In
April, 1993, when the renovation was nearly finished, Esther and I and John
Vanstone, our architect, gave a presentation of the renovation at a meeting
of the Toronto Chapter of the Parkinson's Foundation. I was making the
presentation, but about two sentences in, my speech became slurred and
indistinct, so I turned the program over to Esther and John. Much to my
surprise, I felt no embarrassment or humiliation; it was just part of having
Parkinson's. Despite my poor performance, the evening had gone well, and I
felt good about it.
 The exciting part of it all was the warmth and open way I was accepted by
everyone connected with the chapter - from the newest member to the founding
members who were still active. It took me a while to realize that I was
among peers, and that my dyskinesia did not frighten them. Their
unquestioning acceptance of me was a kind of peer support I had been missing
because of my denial and arrogance.
 I also realised that I had been fortunate in a way that many Parkinsonians
were not. My friends had been my personal support group. I hadn't gone to
them and said, "will you help me cope with Parkinson's by being my support
group?" They had just done it: Stephen Booth, Ian Hamilton, Howard Shill,
Tony Graham and a number of others. It was through the foundation, I began
to realize that there are many Parkinsonians who do not have a supportive
family or group of friends to help them through the rough periods.
 That spring and summer of 1993, when Parkinson's seemed to be accelerating
through my body, I was almost manic in my need for activity and
accomplishment. Esther, as part of her work with the Board of Education, had
been involved in a working group on inner city children and their behaviour
problems. One thing that fascinated me was the health problems that seem to
be endemic there. The data were irrefutable, and led me to try to square my
traditional conservative political views with the obvious need for social
assistance and social justice.
 I was very much influenced by Gertrude Himmelfarb's book Poverty and
Compassion: the moral imagination of the late Victorians. She describes how
the Victorians transformed their passion for religion into compassion for
humanity. But most people in nineteenth century Britain and North America
shared the common ideology of Christianity. This is no longer the case in la
te twentieth century Canada. I wanted to find a system of nationally shared
values that might, on the surface, be similar to what we call our
Judaeo-Christian heritage, but, it would differ in the richness of nuance
and subtlety that comes from its being forged in the crucible of national
debate. It would surely affirm the dignity of human life and the concept of
humanity being a product of God's imagination. I recognized that such a
concept already existed in Toronto, with programmes such as "Out of the
Cold," in which seven churches (one for each day of the week) provided a hot
dinner, bed and breakfast for the homeless on an ideology-free basis.
 The philosophical problem I saw was that as long as these services are
provided without thought of compensation by the state, the institutions
providing them earn the right to speak for those they serve; if they seek
compensation, they will be simply another contractor in the social
assistance system. In addition, I began to understand that the group served
can only be represented by the sponsoring institutions in the short term. As
the group served becomes cohesive, its members need to learn the art of
self-advocacy. This process may be painful for the originating sponsors as
they may find themselves attacked or see points of view espoused which seem
contrary to the originating values.
 During the summer, the more I thought about it, the more I became concerned
about this issue. I talked about it at length at Blue Sea with Tony Graham,
and back in Toronto with Stephen Booth and Tony Lang. I wrote a paper which
I wanted to present to the Toronto Chapter of The Parkinson Foundation. I
showed Joan Prior a draft. Although my proposal was clearly not part of her
agenda, she recognized it as a legitimate viewpoint and invited me to
present it at the September meeting of the Chapter. She also invited me
again to rejoin the executive of the Toronto Chapter.
 The paper, titled Does Toronto Have a Soul?: a challenge to the Toronto
chapter of the Parkinson foundation of Canada, argued that, despite Canada's
universal health insurance, there were a lot of people with undiagnosed
Parkinson's and other chronic diseases living in Toronto's Inner City as a
result of society's sin of omission: not providing sufficient health care
resources to deliver the same standard of care to the homeless and indigent
as is available to rest of society. Society, I argued, had - and has - a
positive obligation to remedy this failure. The task was daunting: to do it
properly would involve a colossal unified effort of business, labour, the
city, the provincial and federal governments to eliminate the factors
leading to poor health in the inner city. But that was not a reason not to
make a start.
 The proposal was well-received when I presented it at the September
meeting. However, I soon realized that I could not expect the Chapter to
drop everything and re-orient itself to my agenda. As Matthew Arnold said,
"it is not a having and getting, but a growing and becoming."
 At that same meeting, Joan asked for volunteers for the position of
Vice-President, with the plan being to succeed her in six months time. After
thinking about it for a few weeks, I called Joan and asked her if she would
accept me in that position. She responded positively and through October and
November I began to immerse myself in the Chapter's affairs. I soon found
that I had a good deal to learn - from the exercise groups and Taoist Tai
Chi classes to the various support groups coordinated by the Chapter as well
as the all-important question of fund-raising.
 During this time I was also winding up for my pallidotomy operation which
took place in December. Because the operation was so successful and I
recovered from it so quickly, I was able to maintain my momentum in the
chapter activities. One day, a few weeks after the operation, I was at the
hospital for a routine follow-up appointment when Jan Duff asked me if I
would see a patient who was going to have a pallidotomy the next day. It was
Peter Kingston, a former president of the Toronto Chapter of the Parkinson's
Foundation. He was quite apprehensive about the operation, and we talked for
about an hour. I told him about my experience and about the anxieties I had
had. When I left, he was looking forward to the operation. I stopped in on
Peter the day after his operation. The change was so great in him and was so
positive that I was moved to tears.
 I began to see other prospective patients and these visits developed into
one of the Central Ontario Regions's initiatives, the Peer Support
Programme, in which Parkinsonian's, particularly those of us who have had
surgical or other special treatment provide advice and encouragement to
others. I have now seen or spoken to over a hundred Parkinson's patients who
were considering surgery to alleviate their symptoms and it gives me great
satisfaction.
 Of course the conversation varies with every patient, but centres on the
Parkinsonian experience, what it has meant to the patient and to me. Typical
questions are: is the operation painful? how does it feel emotionally when
the lesions are made? what is my confidence level with the surgeons? how
long does it take? Is all the neuropsychological testing necessary? how much
improvement should be expected?. In discussing these subjects I have had to
be careful that I offer no medical opinion and am not critical of any
doctors. And, of course, what the operation has done for me. I have to be
candid and say that there are no guarantees; these procedures do not come
with an owner's manual. I always stress that my results, which are the best
the surgical team have achieved to date, may not be replicated.
 Most of the operations are successful and I am almost always emotional when
I see the pleasure and excitement of the patient.   I have become almost a
fixture at the hospital, so much so that occasionally I have taken certain
liberties. Dr. Andres Lozano said to me recently, his tongue only half in
his cheek: "Bill, this is a hospital. As a general rule, the doctors make
rounds on the patients, not the other way round. I fully expect to hear on
the public address system an announcement that "Mr. Harshaw will be
conducting pallidotomy rounds at 2 pm."

After my December, 1993 operation, I became even more active in the chapter
and foundation. I became president of the Toronto Chapter at its Annual
Meeting in April, 1994 and in September I was nominated to the Board of the
Foundation.
 I gradually saw that the kind of support the Chapter and the Foundation was
giving me was unique as is the support it gives everyone. For me, it was
unquestioning acceptance of me as a person with Parkinson's and the
willingness to listen and consider my ideas. That might not sound like a
great deal of support, but it was vital to me.
 Back in the days when I worked at Molson's, I had enjoyed a high level of
responsibility. I had been unable to replicate this when I worked at the
Bank. Intellectually, I could accept that this was an inevitable consequence
of my Parkinson's, but it still bothered me. Now, at the Foundation, I felt
back on track. I was involved in a cause I felt committed to and where my
business experience could be put to work. Initially, Esther had to restrain
me. I was out to recreate the world in six days, and never mind resting on
the seventh day. As I reined myself in, I reached back to Molson days and
remembered some of the lessons I had learned there from mentors like Jim
Black and Drew McCaughey such as the importance of sharing the credit and
taking the blame. And vision. It is essential to have a clear idea of the
goals and objectives you want an organization to strive for. Initially I did
not know what my vision for the Foundation was.
 As it evolved, it was simple. I wanted the Chapter, and then the
Foundation, to develop into more accountable bodies, working for the
stakeholders, above all for Parkinsonians, and answerable to them. Until
this time the Foundation and the chapter had been in the first stage of a
service and advocacy body - the governance was almost entirely in the hands
of the Executive which was essentially self-appointing. I believed the time
had come to extend the governance to the membership at large by expanding
the nomination committee and inviting nominations from the membership, and
having the directors properly elected by the members. Likewise, by moving
the Annual General Meeting until later in the year, when the Chapter's
annual financial statements were ready, these could be properly approved by
the membership. It was also time recognize the professional nature of the
Toronto staff and to formalize and write job descriptions of the various
positions.
  I came to realize that the volunteers are the most important people in the
Foundation. Staff co-ordinate and provide administrative services, but
without volunteers, there is no Foundation. They never let us forget that we
exist to serve Parkinsonians and their community. The volunteers are the
grass roots we dare not lose touch with.
 I soon discovered all my waking hours could be spent on Chapter business. I
had to resist this. There were some events that I had to attend, but there
were not that many of them. Leadership means trusting those in positions of
responsibility to do the job. Despite my enthusiasm, I realised that I
should not to appear at all the committee meetings or I would give the
impression that I had little confidence in the committee chair. And, I
recognised, I am not a good detail person, and often the committees spend a
lot of time on details, as they must.
 In the next years we made some strong advances in fund raising, in
particular with our annual tulip sale and in the Superwalk for Parkinson's.
Charity walks had become a bit commonplace and we had to find ways to set
this one apart. In 1993 the walk raised only $14,000. As chapter president I
had to support the event and by using all my contacts was able to raise
$3000 out of a total of $20,000.
 But one person should not be raising 15% of the revenue. The 1995 Walk had
a number of new features: a new logo and theme slogan "We walk to help those
who have difficulty walking", international participation and a tripling of
gross funds raised to over $60,000. I sent out 69 letters and raised $4,300.
The difference was that in 1995, I was in fourth place in sponsorship
pledges.
 For the 1996 SuperWalk, the Toronto project that had started small had
grown to 23 cities in Canada, New York City, and several European countries.
As well, The Foundation has secured Major General Lewis MacKenzie as
National Honourary Chairman and the Honourable David Crombie as Honourary
Toronto Chairman. The volunteer team has done a superb job in growing
SuperWalk from being a local event to being a major, international
fundraising event.
 The continuing challenge for all the chapters of the Foundation is to reach
all those Parkinsonians and their families who could benefit from the
support of the Foundation. At present the Toronto Chapter has about 500
members, just over 6% of the estimated number of Parkinsonians in the
Greater Toronto Area. This is slightly below the national average 9%. I
worry about whether we can be an effective advocate with such a low share of
market. We have to become more effective in marketing the advantages of
membership to Parkinsonians and their caregivers. It is sad and sometimes
tragic that such a large proportion of people with Parkinson's suffer in
silence and loneliness.

One of our 1994 initiatives was spectacularly successful and extended well
beyond Parkinson's. The cost of medications is a major social problem that,
ironically, becomes more serious with each major discovery by the
pharmaceutical industry. As the technology for discovery becomes more
expensive, so do the drugs. Consequently, without a good drug insurance
programme or government assistance programme, the financial implications of
chronic illnesses to individuals and families can be catastrophic.
 In Ontario at this time, the Drug Benefit Plan, one of the cornerstones of
the Provincial Health Plan, was essentially a list, known as the Formulary,
of drugs which could be provided free of charge to Seniors and to people on
Social Assistance. Although the Ontario Drug Benefit Plan, as it existed,
did provide coverage for a wide range of medicines, it did not provide
secure coverage for people who had chronic diseases, and it gave no help to
people of limited means. Poorer families were having to go on social
assistance in order to be funded for the necessary medications for long-term
diseases and medical conditions - everything from AIDS to renal failure. And
they were losing their dignity in the process. The inequity was tremendous,
because the cost of drug therapy varied so much for different conditions.
For some medical conditions, the cost of regular drugs was crippling even
for people in the highest tax bracket.
 For Parkinsonian's, the important medications are controlled release (CR)
and sustained release (SR) drugs some of which were on the Formulary. One of
them, Sinemet CR (which I used) was not on the Formulary as it was a fairly
new adaption of an existing drug. Seniors and those on welfare could get
Sinement CR for free, but only after having obtained special permission from
the Ministry of Health. This was routinely granted, but only after a lengthy
and frustrating process.  At a meeting of the Foundation Board, we heard
that the Ministry of Health was now considering removing Controlled Release
and Sustained Release medications altogether. Some had already been taken
off the list on the grounds that they were inefficacious. Frank Roth, the
bubbling, witty entertainment lawyer who was President of the Foundation,
had read my Does Toronto Have a Soul speech. He came to me and in his
comical, mock Man From Uncle voice said "Your assignment, should you accept
is to devise a drug plan which will cover all Parkinsonians."
 I accepted with alacrity and with no realisation of what a huge task it
was. In approaching the problem, we had to recognize that, with the
province's huge financial deficit, the Minister of Health had the unenviable
task of having to bake a smaller pie and then carve it up amongst the
ministry's many supplicant.s  For the first time the health budget was being
reduced. It was also obvious that the problem of drug costs was not just
limited to Parkinsonians.
 Our goal was to devise a practical proposal for a drug plan for chronic
illnesses which we could put to the government. It was ambitious, but the
need was great. We had to do more than bewail the problem. We knew that it
was unrealistic as well as perhaps undesirable to demand free access to all
drugs on demand. We were looking for a formula that combined private
co-payment with government funding.
  We involved the Toronto Chapter's very capable Executive Director Maggie
Wheelock and the whole Executive Committee. Most importantly, in order to
make sure we stayed on the rails and came up with a practical proposal we
could put to the government, we established a review committee was formed
made up of tax, medical, and health care experts. It included Dr. Anthony
Graham, Chief of Cardiology, The Wellesley Hospital; Dr. Anthony Lang,
Director, Movement Disorders, The Toronto Hospital; Robert Lindsay, Senior
Tax Partner, Osler Hoskin Harcourt; Thomas McDonnell, Executive Director,
The Canadian Tax Foundation; and Trevor Williams, then the Chief Executive
Officer, The Parkinson Foundaton of Canada. The key member of the committee
was Michael Decter, former Deputy Minister of Health for Ontario. The Review
Committee was essential in ensuring the practicality of our proposal: many
of its suggestions were incorporated in the final document.
 We had to face an important issue at a meeting of the Review Committee in
September. The AIDS Committee of Toronto was the only other group which had
seriously addressed the issue of long-term drug costs. We had invited
representatives of the AIDS Committee to join although we knew that they
were philosophically opposed to the notion of co-payment. The AIDS
representatives were of the view that everyone has as of right access to
needed medications free of charge. We clashed at the meeting, but it was a
polite disagreement.
 The challenge was to devise a plan that is universal, i.e. available as a
right to all residents of Ontario, while at the same time being progressive,
i.e. the private co-payment would increase relative to the individual's
income. After many drafts we arrived at a plan that satisfied the Review
Committee. Here is a simplified example of the proposal:

Net Income, family of 3:  $20,000 $40,000 $60,000
Annual prescription cost: $5000 $5000 $5000
Prescription cost as % of
 income:    25%  12.5% 8.3%
Proposed co-payment:   $350  $1,239 $2,139
Co-payment as % of income: 1.8%  3.1%  3.6%

  We decided to present it at the Annual Meeting of The Foundation in
Montreal in September, 1994. I made the presentation with the title
"Restoring Dignity".
 After I finished, I was walked back to my seat and wondered why people were
standing up. Frank Roth, the President, said "Bill, they are giving you a
standing ovation. This has never happened before."
 Why the standing ovation? Our presentation gave Parkinsonians hope, hope
that the Foundation was looking out for their interests. I then moved,
seconded by David Black, a past president, that my speech become Foundation
policy.
 A day later, through Michael Decter's good offices, I was invited to
participate in a consultation meeting to consider our proposal which was
sponsored by the National Pharmaceutical Strategy Directorate of Health
Canada. It was a great success, but we were not optimistic about its chances
of being adopted by the Ontario government in the near term.
 To the astonishment of most of us, only a couple of months later, on
December 1, 1994, the Premier of Ontario, Bob Rae, announced the
government's Trillium Drug Plan, which was modelled in all important
respects on "Restoring Dignity."
 At a press conference in Toronto, the Minister of Health, Ruth Grier,
announced the plan in detail, including the size of the co-payment. I was
invited to make a statement at a the conference. After the questions were
over, Mrs. Grier publicly thanked me for the impact I had on the plan's
design, and joked, "it's not very often that a lifelong Tory like you is the
author of an NDP program."
  The Trillium Drug Programme as introduced by Premier Rae's NDP government
still had a problem in that the deductible structure or the co-payment
provisions, were not progressive enough. The break points at which the level
of co-payment changed were only three and kicked in at lower rather than
higher incomes.
 We urged the new Conservative government of Mike Harris to make the plan
more equitable so that the primary beneficiaries will be those with low
incomes by using break points which would result in lower co-payments for
low income levels and higher co-payments for those with higher incomes.
These recommendations were accepted by the Government.

Our experience with the Trillium Drug Plan really began the Chapter and
Foundation leadership in advocacy matters on issues that concern all
Parkinsonians. The process taught us a valuable lesson. In dealing with
government, the approach should not be prescriptive, telling the government
in no uncertain terms what to do. You are more likely to get a favourable
hearing and to be successful if your proposal is descriptive of the problem,
offering alternative solutions, allowing the government to take its own
initiative.
 For me, the experience of working on the Trillium plan and other Foundation
activities has been a tremendous opportunity. I have become virtually a
professional Parkinsonian, putting my experience of my years with
Parkinson's in combination with my business skills. My goal in this work is
to make the Parkinsonian experience easier for those who will come after. It
has been part of the process of learning and of intellectual and spiritual
freedom that I have called my adventure with Parkinson's.

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