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Hi Scott: Your comments are right on target,I do a lot of advocacy work and I often speak about Parkinson's being the "designer disease." Now research is beginning to back up that statement by indicating that PD is an umbrella of many diseases (i.e., types of Parkinson's). Your remarks about the Listserv being a place we (people with PD and their caregivers) can "find" each other are so correct. I could talk with a neurologist all day then read something here that says exactly what I was feeling, topping my 5-minute discussion with a "professional." You don't get any more "professional" in Parkinson's than those that live with it day-to-day. Finally, I hope I didn't take your researcher's comments wrong - "lost - grabbing for straws." Aren't researchers "grabbing for straws," also? They are guessing at what controls it or cures it; we're guessing at how to live with it. Thanks for your letter. Peggy -----Original Message----- From: Parkinson's Information Exchange Network [mailto:[log in to unmask]] On Behalf Of Scott E. Antes Sent: Friday, June 27, 2008 10:43 AM To: [log in to unmask] Subject: Re: Sinemet CR & Dyskinesia ???? No matter how much has been researched and written on L-Dopa and other meds, no matter what our individual experiences are, the bottom line (again) is that every PD patient is unique and responds differently to meds and other treatments. This is what makes this malady so frustrating. I have been astounded to hear neurologists ask Laureen, "What do you want to try next?" One neurologist even wrote her half a dozen prescriptions, so that she could decide for herself what to experiment with! As we've already discussed, neurologists take their own approaches to PD. Some have a lot of experience with PD, others have little more than a clue. Some unbelievably overmedicate their patients. Some take a more cautious approach. Some say it's better to start medication early, others later, etc. As a scholar, I have read the literature on medications over and over and over and over, only to conclude that very little exists (to date, and to my knowledge) that applies to everyone in the PD community. One thing we can say for sure is that PD medications have side effects, whether it be hallucinations, diskinesia, gastric distress, or whatever. What makes a list like this one so valuable is that fact that it enables PDers to compare their experiences and share information that hopefully will apply to others on the list. One researcher commented to me that everyone on this PD list is lost, that everyone is just grabbing at straws! (That researcher by the way, does not have the answers, either.) As insulting as that comment sounds, it seems to me that the world of PD is, indeed, an easy one in which to get lost, because everyone who's trusted to know what he or she is doing gives different directions. At least here on the List, people have found *something* important; they've found each other. I don't need to go into how helpful that is. Scott Scott E. Antes Department of Anthropology Northern Arizona University Flagstaff, AZ 86011-5200 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn