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Mackenzie I don't like ANY PD meds! In my early years with PD my neuro told me I had the "good" kind of PD whatever that is. Like a dummy I just looked at him, never asking him what he meant. DBS did stop and controls my bilateral tremors pretty well. My cataract surgeries have grounded me from my exercise routines and I am worse in terms of mobility. Yesterday when I was being prepped for surgery a nurse told me she had a friend who had only had PD 3 years and had dementia and couldn't possibly live alone like I do. Her husband takes care of her. The nurse also told me she knew someone else with PD in terrible shape. Besides losing my life as I knew it, people think I am doing "well". They also thought that when I had ovarian cancer. As everyone knows, I have a 'bad' attitude, not a "good" one. Go figure. What a strange disease! Ray ----- Original Message ----- From: "m power" <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, February 02, 2006 6:27 PM Subject: neuroinvestment.com revisited you all are probably tired of hearing me criticize l-dopa, so after this, i'll try to keep it down. the first time i posted about neuroinvestment.com, i thought the quote would speak for itself, but it has come to my attention that it does not. but first i want to make an observation. i will have had symptoms for 10 years this coming april. i was diagnosed in 2000 and started mirapex in 2001, i think. and now, 10 years in, i am still taking just mirapex. i am fully functional, work full time, have a few mild symptoms that are slowly getting worse, and virtually no side effects from the med i am on. now, it could be that i am just blessed with a very benign (knock wood) version of this disease - but even so, one thing is certain - if i had started l-dopa back in 2001 instead of Mirapex, being under 40 at the time, being female, being slender, according to the studies i have read there is about a 100% chance that i would be experiencing DOOFs (dyskinesias & on/off fluctuations), if not now then very soon, and for the rest of my life (pending some miraculous breakthrough) my drug cocktail, *most of which would be geared toward alleviating the side effects of l-dopa,* would become more and more complicated, and carry with it more and more side effects... and there would be no way of knowing that had i not gone on l-dopa, i would have been fine right now. personally, i find that to be a pretty powerful comment on the drug that is considered to be the "gold standard." OK, now back to www.neuroinvestment.com this website appears to be a very poorly designed and maintained online version of a publication Flint Beal calls "an extremely useful business intelligence tool, providing us with news and views on business, science and clinical topics in the complex field of neuroscience." it basically analyzes the neurology market from an investment perspective, as far as i can tell. on the page i link to below: http://www.neuroinvestment.com/BLSIcom.html neuroinvestment.com is reiterating comments made in some earlier forum - these comments focus on something - a DAT blocker, whatever that is - being developed for use in the treatment of both ADHD and Parkinson's, but the research into the Parkinson's use is somewhat ahead of that of the ADHD use. neuroinvestment.com observes toward the bottom of the page that in recent monkey trials using the DAT blocker in a Parkinson's model, the emergence of "very worrisome" orofacial dyskinesias was observed. They then go on to say that if orofacial dyskinesias were to surface in use of this DAT blocker in *non-parkinsonian* patients, it would be the *death knell* of that therapy - in this case, they are thinking of an ADHD patient population, but the way they phrase it is very specific in its broadness - "non-parkinsonian" - they go on to say that such a side effect *could* also be the end for an experimental Parkinson's therapy, but they are quite definitive in their conviction that a medication with such a side effect *would not fly* if it were to be experienced by someone *without* Parkinson's and that it *might* if it were observed in a person *with* Parkinson's. The quote simply serves to bolster my view that such disabling side effects would not be tolerated in other medications/medical conditions - take viagra, for example - it would never in a billion years have come to market if it caused DOOFs at all, never mind if they were virtually inevitable. Take blood pressure meds, heart meds, asthma meds. One *might* make allowances for such a drug and such a side effect for a few years until they came up with something that *didn't* cause that side effect, but this drug has not only been on the market for 40 years, it has been and still is considered the *gold standard* of Parkinson's therapy - while at the same time, dopamine agonists, the side effects of which, even if one thinks the gambling studies are sound, which i do not, are demonstrably and profoundly less prevalent, continue to get slammed in the press. Fortunately, finally, the field of PD research is exploring the idea that maybe there is a better way to use l-dopa, or perhaps there is a way not to use it at all, instead of just coming up with more drugs that are meant to manage its side effects. __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! 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