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 > > > > > > ----- 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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