I WAS going to wait a week before I calculated the prediction of how many of
you would be prepared to take part in the survey, but have decided to do it
now for two reasons. One, because all the replies came in within 24 hours
and none since then, and two, because the letter from Barb says it all and
prolly (to pinch her word) much better than I could have done.

Thanks to those who did reply, but based on those replies we could only
expect 10% of people on the list to respond to the survey. This is clearly
nowhere near enough so, disappointingly, the survey idea fails.  Barb has
posted the definitive theories for the lack of response so I need not add to
that.

Just one thing, about the last paragraph of Barb's letter.  I hope that none
of you felt that I was reducing you to mere numbers, but I could not think
of any other way to guarantee the anonymity which I thought was vital for an
accurate and truthful response.  I had in mind Marjorie Moorfield's
statement,  "Most PWP's are impotent, even if they don't admit it, even to
themselves!!".

As for what I was trying to achieve, I did not want to produce statistics
like, "73% of people with PD reported sexual problems by 5th year of
diagnosis".  I wanted practical information to show whether, for instance,
certain anti-depressants reduced abilities more than others, if at all.

Anyway, COME ON BARB, WHO could ever reduce YOU to a number. <Broad grin>
No, don't believe ANYONE could do that. You're having me on again!!!!!!!!!!

BTW, one lady wrote to me privately saying that her husband with PD took one
brand of anti-depressant and was totally unable to have sex for the 2 years
he was on it.  They assumed it was the PD and did nothing for the 2 years.
Finally, their doctor changed him to a different anti-depressant and he has
not had the slightest problem since then.

Three men wrote to me on the subject.  I hope they will excuse me if I sum
up their letters as wishing to confirm that THEY had not been affected
sexually and wishing to compare our drug regime.  Now, should ANY of the
four above written via the group?  Difficult to say, some of you draw the
line on "Personal" letters in different places.

For example, Bruce Warr wrote via the group asking about my qualifications
and ideas regarding the survey, as well as kindly offering his help. I
thought it correct to write back via the group so that the 10% of the group
that were interested in the survey, could see how we would have tackled it
and what expertise we could rely on.  David Boots wrote to me privately
saying, "Why is this not going to Bruce directly?".  See what I mean?

Well, that is it friends, I am conscious of the fact that I must not bore
you, so I will drop out of this subject for a while.

BTW Barb, what is a "sex survery"???  Is it like the food counters where you
help yourself to whatever you fancy?  Gosh, you really DO have everything in
the States!!!!

Avert your eyes everybody, just going to return Barb's cuddles.

Ernie 53. diag 3yrs.


At 15:32 07/12/96 -0500, you wrote:
>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]>
>
>
Ernie Peters <[log in to unmask]>