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I believe this to be a very timely subject. What I believe is necessary is a conference of neurologists to discuss their experiences and if necessary conduct a "professional" survey. Possibly we on this list could assist. It is issues such as this that a Parkinson's Patient's Congress might place on a national Parkinson's agenda. My personal experience suggests the question of agonists may be even more complex than determining the merits of each. I waited 6 months before attempting to change from Permax to Requip. I had hoped to avoid some of the problems often experienced early in the learning curve. Over 3 weeks I gradually reduce my Permax from the three mg per day dosage and increased the Requip up to 6 mg per day. The transition was ok until I quit Permax entirely. Then I started a 2 hour on/2 hour off cycle. When I went back to only one mg of Permax per day(.5 mg a.m. and p.m.) I was fine. That raises the obvious question is some combination of agonists better? Just as obvious is the number of combinations skyrockets. Drug companies are not likely to pay for testing of combinations which include competitors product. -----Original Message----- From: David Havard <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Friday, November 28, 1997 7:05 PM Subject: Re: Another survey? >Dear friends, >I hesitate to suggest another survey but!! > >My vested interest. >I am on Pergolide as a single treatment for the early stages of >Parkinson's, but do not feel too well quite often and uncertain as to >how effective it is. I will be visiting my neurologist just before >Christmas to discuss the situation. If possible I would like to keep on >a single agonist treatment. > >Background. >To my inadequate knowledge there were two new agonists this year >[Mirapex and Roperinole], at least one of which, Mirapex, generated a >large amount of interest. I have been appalled at some of the tales >concerning startup with Mirapex - the supposed miracle drug from earlier >comments. Is, however, this impression representative? >On a separate but related issue, from at least one of the previous >surveys I thought there was a very significant chance that the sample >used was biased. This, of course, will lead to flawed results. > >Objective: >To run a survey with the objective of giving a more representative >picture of how the two new agonists are working for members of our >group. > >Proposal. >IF the survey proceeds, ask ALL list members to respond[including those >who do not take the drugs I.e. yes I take the drug, no I do not] and >pose a very limited number of simple questions. All replies would be to >a private email address so as not to clog the list. I am going to be >available on the list until at least the 10th December, and would hope >to complete everything in that sort of time frame. > >Question. If the exercise goes ahead, could a membership list be made >available to me, it would probably save a lot of typing and lead to a >better understanding of the sample used. > >Democracy in action >Before proceeding I would solicit comments, particularly from the list >"elders". If more than 50 percent are in favor I will post a >questionnaire. Before posting the questionnaire I would be interested >in a quick discussion of the questions direct with any particularly >interested parties. Let me know. I am not a statistician, but have >worked with relatively complex databases - any advice gratefully >received. If there was a desire to repeat the exercise in say 3 - 6 >months time [to see if there was any significant change] I would be >willing to carry that out as well. I presume this type of exercise has >not been carried out before. >I SEE NO POINT IN WORKING WITH A FLAWED DATABASE, IF MEMBERS OF THE >LIST AREN'T WILLING TO RESPOND, PLEASE SUGGEST I DO NOT PROCEED. >I promise to keep the questions simple as I have no wish to compete with >valid scientific research, which certainly cannot be carried out in this >manner. Additional questions [such as what the negative symptoms are] >could be asked afterwards if people are interested. > >I have seen several surveys run this year so maybe another one is too >much. I will not be offended if the answers are negative. > >Best wishes > >David