A number of you have replied to my recent postings and I would like to
answer some of the questions and add one or two further pieces of
information.

First of all(Maxine) I would like to say that I do understand that the
purpose of the group is to offer support to each other and provide
information on developments and research regarding identifying causes and
potential new therapies. I apologise if I have offended any of you in any of
my previous postings by venting my frustrations.

 There is a greater awareness these days because of the work of people like
Michael J. Fox but we also can make a contribution by simply providing more
data from our personal histories - which can be the nucleus of a greater
database - such that possible causes can be identified.  I do not believe
that the present diagnostic procedures go deep enough in personal histories.
It is no longer just affecting older people but younger people more and more
year by year.

What has changed in the last 40 to 50 years?  Work has become more
stressful.  Environmental changes.  Greater prescription of drugs.  Greater
use of chemicals in the food chain.  Greater use of soft and hard drugs.
Inadequate control of toxic materials in industry (Roberta, did your father
use Mercury in his job?). Inadequate health and safety controls. To name
just a few.  It is reasonable to say that possible causes are related to one
or more of these areas.  In my case I know for sure that an antidepressant
was the cause.

 My experience was that the neurologist (and my GP) based his findings on
the simple physical and visual analysis.  I believe that when I answered
some questions I mentioned my clinical depression and medications which were
prescribed; and my susceptibility to anxiety and stress, primarily caused
through work.  None of this was taken into account.  This was in 1993.  In
2001 I began seeing a homeopath and it was through her and my open
conversations that I discovered the antidepressant (Prothiaden) which I had
been prescribed from August 1988 through to January 1990 was documented as
inducing Parkinson's.  I am almost certain that my neurologist knew this but
did not say anything.  I informed the psychiatrist and I had been under that
I had been told I had Parkinson's; she never answered by phone call -- I
wonder why!  A senior registrar at a neurological rehabilitation unit
described the particular antidepressant as being, "a very nasty drug".  This
has been withdrawn.

A couple of years ago I had the opportunity to talk to a physiotherapist who
specialised in working with the Parkinson's unit in hospital in the North of
England.  I described what I was doing regarding medications and
complimentary therapies.  To keep a long story short just let me say that
she said to me, "if you were my husband I would not let you take sinemet".

(Roberta) I've been taking pergolide (Permax) as a monotherapy since
February 1999.  Within two months of starting this the improvements to my
life were almost miraculous in that I was able to do virtually everything
for myself once more.  By the fourth month I was able to drive my car with
complete confidence and control and I started taking my dog for long
walks -- at least one and half miles -- each day.  In the fifth month at a
review my neurologist tripled the dosage to 3 mg per day (that's 1 mg three
times a day).  He did this because "it's the recommended maintenance level".
Once again he took no account of my susceptibility to anxiety which affects
my mobility.  Since January 2000 my mobility has become more difficult and I
suffer with swollen legs and ankles.  I can still drive with confidence and
control unfortunately  I cannot take my dog long walks.  Eight weeks ago I
decided to reduce my intake to 2 mg per day and slowly but surely I am
walking a bit more each day.  The only other problem I seem to have is
sleeping.  For the past two years I haven't slept straight seven nights in
bed at all!  I find going to sleep almost impossible that in the end I'm so
exhausted that I crash out in the chair usually in front of the PC.
However, just this week I started going to bed and sleeping six hours
minimum.  Last week I attended my second daughter's wedding, completely
mobile and unaided -- nobody would have thought I had Parkinson's.

About almost two years ago I started taking sinemet (3 times a day -- 62, 5)
because my GP described me as being seriously under medicated.  Again I felt
he wasn't listening to my problems of anxiety and emotional stress caused by
the collapse of my marriage.  At one point I cried and he concluded that I
was clinically depressed -- when he returned a week later I asked him,
"can't a man cry without being depressed "?  He didn't even answer!

Let me say at this point that I'm sharing my story with you and in no way am
I advocating you do anything different to your regime because of what I am
saying.  The message I'm trying to convey is one of believing in one's self
and not simply accepting what we are told and, for the sake of repeating
myself, the importance of establishing the database.  We owe it to ourselves
to find out the likely cause(s) of our individual PD and I feel morally that
we have a responsibility to help future generations by forcing change.

I thank all of you for the support and encouragement you have shown me since
I joined the group two years ago.  I just wish we could all be closer
together so we could actually meet face-to-face.

All my best wishes.

Marco.

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