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Y'know, Ernie.... I've been mulling over your idea for a "sex survery," for Parkinson's research, and have finally reached a conclusion based upon both my past experience with this group, and this current disussion going on here on the PD list, and also based upon my own particular and unique job within the chronically ill commmunity. In my opinion, for such an inportant HUMAN topic, as well as a much needed topic here for our Parkinson's group discussion, sexuality and related problems really hasn't BEEN well discussed within this group at all, compared to many of the other topics we've tackled here. The topic itself was well-received, but now, after a coupla weeks of intermittant messaging going back and forth, it's just kind hanging there... going nowhere. After thinking about this retisense <sp?>, I've concluded that there's a bigger problem than the majority of you are a\ware of. This is is based upon the fact that in my job as forum manager on The Microsoft Network's Chronic Disease & Disorders Forum, where I deal with hundreds of individuals each day having TONS of chronic diseases including PD between them, AND where I added a Sexuality and Chronic Disease area to our discussion topics a few months ago. Initially that area was met with the same "It's about TIME," that the same topic got here on the PD list. But after that first burst of posting, the topic has simply withered and died on the vine, JUST as it's doing HERE! I'm truly AMAZED! And I've concluded that this is a problem affecting the entire chronic disease community, prolly world-wide, and with individual exceptions. Part of it is prolly just plain apathy and a certain acorss-the-board chronic physical tiredness that so many chronic diseases have as a symptom, and part fear and hesitation, and part is also the thought that nothing is going to help (WRONG!), and part is that many of us may indeed be sexually active to some degree, but are single and sexual relationships are few and far between. Also, there are many married couples that EVEN had both partners been physically healthy,, they STILL wouldn't have had a sexual relationship, for one reason or another >From the above, I believe that THIS topic and the clinical facts about it's relationship to chronic disease is going to be the one topic that will never actually be resolved by our members here, nor by the greater community. Finally, Ernie... to me, very personally, while I have no hesitation in discussing my own sexuality or the topic itself, I DO think a certain "specialness," a special preciousness of this one topic is lost when it's reduced to mere NUMBERS. Thus, I wouldn't take part in such a survey myself as kind of a protest (if that makes any sense at all?). Warmest regards (and huggles and smooches) <grin> to you and Julia. Barb Mallut [log in to unmask] ---------- From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf of Ernie Peters Sent: Saturday, December 07, 1996 11:19 AM To: Multiple recipients of list PARKINSN Subject: Re: Sex Survey Hello Bruce, Thanks for writing. No, I am afraid I am not an experienced researcher. I have high qualifications in maths (I used to be in microwave communications), and in my last post I was in charge of the statistical gathering and unit costing for a large budget. Other than that I could only offer a keen analytical brain and a determination to find out as much as possible about our common ailment. However, your reply was exactly the response for which I was hoping, your professional expertise would be invaluable to such a survey. I would be more than happy to have any help and advice you offered. Frankly, somebody like yourself should take charge of the survey and others like myself should work under you. I would be happy enough just to have got the ball rolling. A control, as you say, is important. I have been pondering this one and come to the conclusion that we could not use the partners of our subjects as controls, because the symptoms of the problem we are investigating could be reflected into their partner. Anyway, perhaps we had better wait a few days to see whether enough people are interested enough to take part in such a survey. There is no point in spending time working on something which may not get off the ground. Ernie. At 00:59 07/12/96 -0500, you wrote: > >Ernie, > >You don't say what your C.V. is so I can only assume that you are an >experienced researcher. As you indicated, much thought must be given to >the experimental design, both to how the data are to be collected and to >how they are to be analyzed. Also you made no mention of a control group. >Although your proposal would only be an observation the statistic >obtained from it would have meaning only in comparison with a "norm". > >My area of specialization is in developing statistical models of patients >which will aid the healthcare provider in determining a risk assesment for >the patient and in determining the effecacy of alternative treatment >regimens. (My ultimate goal is to develop a model for PD.) I would be >willing to help you with developing and analyzing the survey if enough >people express an interest in it. > >Bruce >55/8 >Sinemet CR & Pramipexole > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ >Bruce G. Warr, Ph.D. "Experience is what enables us to recognize >Healthcare Informatics Lab a mistake the next time we make it." >Information Systems Dept. >University of Maryland Baltimore County > >http://umbc.edu/~warr/ >(V) (410)455-3206 >(F) (410)455-1073 > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > > > Ernie Peters <[log in to unmask]>