What a wonderful message you give to others....that there is hope for all of
us ....that we can do and be better than we are as long as we don't lose our
vision  of the future....that it takes hard work, perserverance, persistance
and drive along with good medical support....we really can do and be better
off than we are...just don't give up....Congratulations to you for making a
better life for yourself....you are a role model for all of us ....we can
have A SECOND CHANCE  AT LIFE...Joan
-----Original Message-----
From: William Harshaw <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Thursday, July 22, 1999 4:37 AM
Subject: MY SECOND LIFE


>MY SECOND CHANCE AT LIFE
>by
>Bill Harshaw
>
> Most of us don't do as well as we could in our first and only chance at
>life. I certainly didn't.  Several errors in judgement resulted in life
>being less comfortable than it might otherwise have been.  Among them was
>the way I managed, if that word can be used, my Parkinson's Disease.  I was
>diagnosed in 1981; by 1989 I had to retire at the age of 45 on long-term
>disability.   By 1993, I was so incapacitated that I believed life was
>behind me and that I would shortly be incarcerated in a long-term care
>facility, cut off from the world and the world cut off from me.
>
> Then Dr. Tony Lang, my neurologist, referred me to Drs. Andres Lozano and
>Ronald Tasker, two neurosurgeons at The Toronto Hospital, Toronto Western
>Division.  They did not speak in terms of miracles, but of my sense of need
>for meaning and hope in my life.  They exercised a transforming influence
on
>my life by performing two experimental neurosurgical procedures which
>together greatly restored my mobility.  The saga of these operations has
>been recounted in previous issues of this Report.
>
> I could walk again.  We take all the normal activities of daily life -
>walking, eating, speaking, writing - for granted   Until something happens
>that puts constraints on us.  Like Parkinson's for instance.
>
> I had to relearn normalcy, the way that most of the world does things.
>Following half a dozen years of increasing abnormalcy, this was a pleasure!
>
> The pleasures of life tend to become sophisticated with the complexity of
>living in a large city in our time.  Since my two operations, our family
>life has simplified because of a new awareness of what is important and
what
>is not.  We place less emphasis on material things and focus more on the
>joys of nature.  This process has not been entirely voluntary for us.  In
>the fall of 1992 my wife, Esther, was diagnosed with chronic progressive
>Multiple Sclerosis
>
> In the Spring of 1994, I was appointed President of the
>Toronto Chapter of the Parkinson Foundation of Canada and was elected a
>Director of the Foundation in the fall of the same year.
>
> In April of 1994, we were very concerned that controlled release
>medications, Sinemet CR™ for example, were not on the Formulary, a list of
>prescription drugs approved for automatic reimbursement by the Ontario Drug
>Benefit Plan, the government-funded plan for seniors and people on welfare.
>Special application had to be made by the patient's physician, a costly and
>time consuming process which could be canceled by bureaucratic whim.  On
>further investigation, we learned that some medications  had been approved
>on a ‘crisis list' for diseases and conditions that had ‘emergency status,
>cystic fibrosis drug therapy, for instance.  While not questioning the
>merits of these drugs on the ‘crisis list', it seemed manifestly unfair to
>have important medications approved, denied, or on the crisis list purely
on
>the basis of the effectiveness of those advocating the drug.
>
> As well, we believed that families should not have to do without food or
>clothing to buy medications, or declare bankruptcy in order to receive
>social assistance and participation in the Ontario Drug Benefit Plan.
>
> At the Annual General Meeting of the Foundation in September, 1994 I
>presented a paper "Restoring Dignity: a drug plan for all Ontarians". The
>plan was designed to provide universal coverage with a graduated co-payment
>schedule based on the income tax system.  Naturally, the people with
>Parkinson's who attended the meeting enthusiastically received the plan.
As
>well, interest was shown by both the Ontario and Federal governments and I
>was invited to present the plan to a Federal Task Force.  We thought we had
>several months, if not years, of lobbying ahead of us before the plan was
>approved.  Imagine my surprise when, in early December of 1994, The
>Government of Ontario announced The Trillium Drug Plan which incorporated
>all the essential elements of the Toronto Chapter's plan, except that it
was
>not progressive enough.  Following a change of government in 1995, the
>Chapter Executive made further representations, with the result that the
>co-payment was made much more progressive.
>
> The Trillium Drug Plan was the first and most successful example of my new
>mission in life: to ease the burden of having Parkinson's.  It also
>illustrated the benefits of working as a team rather than going off in
>several directions at once. I made the decision that I would dedicate my
>life to others, to work in such a way that having Parkinson's would be less
>burdensome than it is now.
>
> I began receiving invitations to speak at Chapter and Support Group
>meetings.  Sharing my experiences as a person with Parkinson's has been
very
>rewarding, because invariably, others have shared their experiences with me
>about how they coped.  It has been a privilege.
>
> Often I reminisced about how frightened and alone I had felt at the time
of
>my diagnosis eighteen years ago.  If only there had been someone available
>who had been through the whole experience of Parkinson's, to whom I could
>have talked and who could have related his/her experience as a person with
>Parkinson's to me and my situation
>
> During a conversation with my good friend Dr. Tony Graham, a cardiologist
>who has provided real leadership to The Heart and Stroke Foundation of
>Canada, he mentioned a programme initiative of his group.  Called Peer
>Support, the programme used patients who had survived heart attacks and
>strokes to offer support to those just going through it.  As we chatted, I
>realized that this concept, with some modifications, could be applied to
the
>Parkinson Foundation.  After discussing the idea with staff and the Board
of
>Directors, the Parkinson's Peer Support Programme was launched in January,
>1996 with eight carefully selected volunteers.  We all took part in a six
>week training programme, led by Mrs. Pat Fleming, an experienced case
>supervisor and a person with Parkinson's herself.  The sessions covered
>topics such as confidence building, community resources, what to say and,
>more importantly, what not to say.
>
> We were honored by having our Peer Support Programme included in the
>resources made available to patients at the two hospitals in the greater
>Toronto area which have movement disorder clinics.
>
> This article has recounted some of the successes I have had in my second
>chance at life.  They would not and could not have happened without the
>support of my family, my medical-surgical team - who consistently provided
>me with the best medical care in the world, my two mentors, Tony Graham and
>Lew MacKenzie, every member of the Foundation  - for they are my support
>group.  Their support and encouragement has been the main reason for my
good
>fortune.
>