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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 > > > > ----- Original Message ----- > > From: "Automatic digest processor" > > > > To: "Recipients of PARKINSN digests" > > > > Sent: Thursday, January 12, 2006 11:32 PM > > Subject: PARKINSN Digest - 11 Jan 2006 to 12 Jan > 2006 > > (#2006-18) > > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: > > mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > > > > > > > > > --------------------------------- > > Yahoo! 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