Hans, Bruce 'n All....

I'd had PD symptoms for 7 years by the time I
was diagnosed many years ago.   One of the
problems I ran up against - and it's STILL a common
problem with many Parkies - is that my NEURO
made the decision not to give me any PD drugs
for several years because I was only 40 at the time.

My NEURO, who had seen me ONE TIME in my
entire life made that decision without consulting ME,
and without appraising me of all my options.

I may have been stunned and in emotional pain
when I got that diagnosis, but from HERE I can see that
particular neuro had his own beliefs in how best to
treat a newly diagnosed young onset Parkie.   I
would have taken a different route THEN had I known
all my options.  Instead I believed and trusted my neuro
was TREATING me, when he was really MONITORING
me (with the best of intentions on his part)

Had I been advised of my options THEN, I feel I
would have made my decision upon the facts
that I needed to function at my best because of
work demands and expectations, and I had my
two daughters living at home - I HAD been an active
mother, and the PD was slowing me down.

Without Parkinson's meds at the time, I KNOW I wasn't
working at my best, nor mothering at my best.
The fact that my employers seemed pleased with my
work was only because THEY didn't know I wasn't at
my peak, didn't know I had PD, and weren't aware of
what a struggle each day was  for me.

To my daughters, I was just "Mom," and they loved me
despite my having PD..... But _ I _  would've liked to
be the mom preferred to be and COULD'VE been
had I been on PD drugs at the time.... A more active mom...

I STRONGLY believe that ANY neuro making a
diagnosis of PD MUST appraise the patient - no matter
their initial reactions to the diagnosis - of ALL the drug
options available at the time.  The newly diagnosed PWP
is not a child just because they have a PD diagnosis
and doesn't need a DOCTOR to make THEIR decisions
without at least OFFERING  the Parkie all drug options.

If, at that time, after being made aware of all Parkinson's
drug options, the newly diagnosed PWP puts their
treatment entirely in their doctor's hands,at least they
have know there are options and that they as patients
CAN participate in their own treatment IF they chose.

I wish I'd known about that choice when I was first diagnosed...

Barb Mallut
[log in to unmask]






----------
From:   Parkinson's Information Exchange on behalf of Hans van der Genugten
Sent:   Saturday, June 06, 1998 3:10 PM
To:     Multiple recipients of list PARKINSN
Subject:        Re to Bruce: Delay starting Sinemet

Sat, 6 Jun 1998 01:17:34 -0400 Bruce Anderson <[log in to unmask]>
wrote:

>Hans,

>This is positive, proven incontrovertible fact?  I've never heard it
>expressed so positively - and clearly - before.  We should, if we can, stay
>away from most Sinemet for the first 10-15 years. I was diagnosed in early
>1995 and they have me on 4 25/100's a day of it plus 6 mg of Mirapex - and
>i'm been doing very poorly, especially in the mobility department. It
>sounds like i should at least cut back some and see what happens ???

Hi Bruce,

There are no proven incontrovertible facts in PD, nor in it's meds.
That's IMHO one of the mayor reasons for the diversity in treatments given.
NO ONE knows what's best. Also it's strongly patient-related: the med that
works excellent with one PWP, works not or poorly with an other PWP.
Often it's a (long) period of try and error with various med(combinations)
before the "right" combination is found. Meanwhile the PWP symptoms worsen
or extra symptoms appear, and the whole procedure of try and error starts
all over again. Some PWP indicate to WANT to start with L-dopa, because they
want the best results NOW, while they are young and want to enjoy life NOW.
In 10-15 years can change a lot (better meds, perhaps even the CURE).

But as far as I know the general protocol used to give medtreatment to PWP
by the top-neuro's in the Netherlands is the one I discribed for the reasons
given.
Of course this has to be adjusted to the PWP's needs and possibilities and
reactions to the treatment started.

Reading the above you understand that it's difficult to give a personal
advise about the dose of your meds. That is a task of try and error for you
AND your neuro! (BTW Mirapex (pramipexole) is NOT yet approved in the
Netherlands, probably will be end of 1998.)

Hope your mobility will improve soon,

Greetings, Hans.