Alas:
We are PWP's.
We need drugs to function.
All drugs are toxic.
So, until THE CURE comes...
Carole

--- m power <[log in to unmask]> wrote:

> hi carole,
>
> i am going to try to be extra brief because otherwise
> i tend to go on forever and ever and ever -
>
> - what works for you may not work for me - true - but
> the numbers show there is a way better than even
> chance that regardless of what works for us, we will
> both end up on l-dopa, and both of us will end up with
> DOOFs (Dyskinesia & On/Off Fluctuations ;-))
>
> - very, very happy there is a drug out there that
> allows you to write and walk. inconceivable that,
> after 40 years, you still have to pay such a high
> price for those things
>
> - we don't know l-dopa is not toxic - 40 years and all
> anyone ever seems to come up with is "inconclusive -
> more study is needed."
>
> - our "best" poison should not, after 40 years on the
> market, still be vying with our disease for the title
> of 'most disabling,' in my humble opinion.
>
> call me crazy, but i just don't think the "best" comes
> anywhere near good enough.
>
> mackenzie
>
> --- Carole Hercun <[log in to unmask]> wrote:
>
> > Because it works. For me. PD is a designer disease,
> > and
> > what works for one of us may not for another. I
> > write now
> > that I can no longer practice as a psychiatric
> > nurse, and I
> > need to be mentally alert, creative, etc.
> > The Sinemet does that for me. I remember the first
> > time I
> > took it. I could almost hear those dormant brain
> > synapses
> > buzzing. I also take Mirapex as an adjunct med, and
> > while
> > it helps, it leaves me foggy and forgetful. I am now
> > beginning to have some dyskenesia, which is a b---h,
> > but I
> > am dealing with it because the drug enables me to
> > write,
> > and walk.
> > A last thought-L-dopa has been around a very long
> > time. We
> > know its side-effects, etc. As a nurse I saw many
> > new meds
> > marketed as having no s/e's. Prozac is a good
> > example. Then
> > a few years down the pike they are blaming it for
> > everything from suicides on down.
> > We have also seen good old reliable drugs turn out
> > to be
> > toxic, i.e., Tylenol and liver damage. So, I think
> > its
> > pretty much like life. You pick your poison, and you
> > take
> > your chances...
> > Peace,
> > Carole Hercun
> >
> > --- m power <[log in to unmask]> wrote:
> >
> > >   hi all,
> > >
> > >   in what i am about to say, i am speaking in
> > general
> > > terms - i do not mean to minimize anyone's
> > experience of
> > > the side effect of obsessive behavior.
> > >
> > >   In the study that came out in 2003, 1.5% of the
> > people
> > > who were put on mirapex developed serious gambling
> > > addictions - that is "only slightly higher than
> > the
> > > reported rate in the general population, which
> > ranges
> > > from 0.3 to 1.3%." does anyone know if that is
> > even
> > > statistically
> > >
> >
>
significant?(http://www.abc.net.au/science/news/health/HealthRepublish_922460.htm)
> > >
> > >   by contrast, 100% of early onset folks put on
> > l-dopa
> > > will develop both dyskinesias and on/off
> > fluctuations
> > > within 6 years (see Quinn, Young Onset Parkinson's
> > > Disease, 1987, Movement Disorders, Vol. 2, no.2,
> > p.
> > > 73-91) and 75% of people put on l-dopa "will no
> > longer
> > > have a smooth, stable and effective response"
> > after five
> > > years of treatment - in other words, 75% overall
> > will
> > > develop dyskinesias and on/off fluctuations within
> > five
> > > years (see Fahn, Parkinson Disease, The Effect of
> > > Levodopa and the ELLDOPA trial, Archives of
> > Neurology,
> > > 1999)
> > >
> > >   i am curious - i do not experience on/off
> > fluctuations
> > > or dyskinesias, having never taken l-dopa, because
> > > looking in from the outside, it looks like
> > somewhere i
> > > would do everything i could to avoid going. and
> > yet,
> > > people rarely talk about them (and they certainly
> > don't
> > > get the press 1.5% gambling does, but of course
> > that
> > > could be because these other statistics have been
> > well
> > > known in the research community for at least 20
> > years) -
> > > are they just not as bad as i think they are? or
> > are
> > > folks resigned to experiencing them because l-dopa
> > is the
> > > only thing that works (or worked) for them? or do
> > folks
> > > not know that the risk is so high until it is upon
> > them?
> > >
> > >   if anyone has any thoughts on the subject, i
> > would love
> > > to hear them. i simply cannot understand how a
> > drug that
> > > has such a gargantuan chance of leaving people
> > with
> > > disabling side effects has been "the gold
> > standard"' for
> > > about 40 years.
> > >
> > >   mackenzie
> > >
> > >
> > > Beverly Forte <[log in to unmask]> wrote:  I too
> > stopped
> > > Mirapex because of some compulsive behaviors and
> > my
> > > neurologist refuses to give me Requip. I had dbs
> > brain
> > > surgery in Dec 2005.
> > > After stopping the mirapex i went into a deep
> > depression
> > > which does not seem
> > > responsive to antidepressents. My energy is also
> > > extremely low. Obsessive
> > > behaviors now? Nope.. I am lucky to get out of bed
> > every
> > > day. Has anyone had
> > > this experience and any suggestions? I have a
> > doctor's
> > > app Jan 16th and hope
> > > to have my own suggestions.
> > >
> > > Thanks...for sharing.
> > >
> > > Bev in Tex
> > >
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