So, ... people were right when they said the net was full of sex!  It is
even here on the Parkinsn list!!

Well, whether people like to admit it or not, it is one of the greatest
driving forces in our world AND it is medically relevent to PD so I would
EXPECT there to be some discussion on the subject.  Some very interesting
mail has come in from people like Henry Guttentag, Barbara Mallut and Ida
Kamphuis amongst others.  Now I would like to have a say.

I may use an odd word (strictly medically) in writing about it that MAY
offend some people, and the subject is unmistakable so please use the delete
button now if you do not wish to read further.  There is nobody under age on
this group anyway.


Barb Mallut wrote:

>for over a year now, I've come to see how insecure SOOO many chronically ill
>people are when it comes to their self-worth.  This seems to cross the
>boundries of all chronic diseases, and isn't at all limited to PD.  And let's
>face it... when there's an impaired view of one's own self-worth, generally
>there's depression, too.  Who in the world would feel sexual OR sexy if they
>believe themself to be less lovable or unlovable, and/or are depressed much of
>the time?
>
>Uhhhhh... this is NOT an ideal setting for anyone's sexuality to blossom and
>grow... Unfortunately.

Eloquently put as usual Barb.  Now let me put it from the male point of view
and stress the crucial word when it comes to lovemaking.  It is CONFIDENCE!
All the things that Barb has mentioned above can lead to that lack of
confidence and then you can get into a vicious circle.

It works like this:  A male HAS to achieve an erection to make love
properly.  He cannot pretend or do it only for his partner whilst not in the
mood himself.  He can please his partner in other ways but the normal
procreative act itself requires an erection.  All the things mentioned by
Barb above will lead to a reduction of that confidence.  That can lead to a
terrible vicious circle where one less than successful episode can increase
anxiety and lower confidence the next time with even worse results.

The point I am trying to make here is that you only have to DOUBT your
ability to perform to find that you genuinely CAN'T perform.  This is
important because there may be no PHYSICAL reason for the impotence just the
doubt and loss of confidence.  In talking about this I think it is important
to point out that one could have a strong libido (sexual urges) but still be
impotent (unable to achieve an erection)  (To lighten the subject a little,
perhaps it is like the man who said the sex was all in his head and he
wanted to lower it!!).

One should not underestimate the the part that the male Ego plays in all
this.  Just look at the definition of the word impotent.  When not applied
to sexual dysfunction it is defined as "powerless" "lacking the necessary
strength".  No wonder men are sensitive about it.  Yet Jeremy Browne
exhibits more "Manliness", guts and courage for admitting to a problem than
would be proved by any number of automatic reflex actions of a male organ.

This is why I believe that ultimately, lovemaking with a wife or partner
that you love and have been with for years is so much easier.  You don't
have to PROVE yourself, and if you do have an "off night", your
understanding partner knows what you are normally capable of and that it is
not because you do not care for her or no longer find her attractive.

Luckily, and fingers crossed for the future, the "off nights" have been few
and far between.  However, the "thought" of failing because of the PD itself
or the drugs is never too far away and does need a firm push to the back of
the mind.  This is not always easy.  I have sometimes found that I have
"thought twice" about lovemaking at a particular time because I realised I
was "between tablets".

I was diagnosed with PD 3 yrs ago and was at first on Eldepryl + Sinemet,
now on 3 Sinemet CR per day.  So far I have seen no change in my sexual
abilities.  (Gosh, when I told Julia I was going to take up the subject she
said she wanted to see it before I sent it. Squirm.)  Anyway, we have a very
happy full sex life and as yet PD has not affected that aspect of our lives.
But, YOU HAVE ME WORRIED!

I suppose one of the reasons I wanted to write in was because I wanted to
reassure anyone recently diagnosed that it was not necessarily the case that
their sex life would be affected and that it was important to avoid the
witch doctor's curse syndrome (You are told you will die so, YOU DIE!).  The
other is that Henry is right, it is a most important subject and should not
be a closet subject.

Maybe some drugs affect people more than others?  What about Bromocriptine?
We used to hear stories of Bromide being put in the tea of men in the
services to keep them sexually "Quiet", was there a connection and is this true?

Well, I hope I did not shock anybody in talking about it, but it was in
context.  You never know though, there are all sorts of attitudes around.
Personally I believe people are really strange on the matter.  Take the
ancient Chinese for example.  They used to make porcelain naked figures of
the female form so that when the doctor came they could point to where it
hurt without mentioning names or (God forbid) taking their clothes off)

Take violence and sex on the TV and in films for instance.

The first can involve murder, decapitation, stabbing etc and despite the
fact that it is obviously undesirable/anti-society and most people
experience very little of it, if at all, in a lifetime ....it is plentiful
on television and accepted.

The second, ie normal lovemaking, which virtually everybody experiences
probably thousands of times in a lifetime, is fun, harms nobody, and is a
natural act without which the human race would die out within one
generation,..... is shown rarely if at all.

I sympathise with a view expressed in a top newspaper some time ago that
suggested that as real life involved very little violence but lots of sex
they should show a lot less violence on TV and a lot more sex.

And what if in years to come our children grew up copying what they saw on
the TV?  Well, it would probably be a better world to live in don't you
think? <Grin>

Ernie.











At 19:40 29/11/96 -0500, you wrote:
>Ida... I suspect that much of how Parkies in general respond sexually also has
>t do with the individual's feelings of still being a lovable person now that
>they have a chronic degenerative disease.
>
>After managing the Chronic Disease & Disorders Forum on a major Network for
>over a year now, I've come to see how insecure SOOO many chronically ill
>people are when it comes to their self-worth.  This seems to cross the
>boundries of all chronic diseases, and isn't at all limited to PD.  And let's
>face it... when there's an impaired view of one's own self-worth, generally
>there's depression, too.  Who in the world would feel sexual OR sexy if they
>believe themself to be less lovable or unlovable, and/or are depressed much of
>the time?
>
>Uhhhhh... this is NOT an ideal setting for anyone's sexuality to blossom and
>grow... Unfortunately.
>
>Barb Mallut
>[log in to unmask]
>
>----------
>From:   PARKINSN: Parkinson's Disease - Information Exchange Network on behalf
>of Ida Kamphuis
>Sent:   Friday, November 29, 1996 3:05 PM
>To:     Multiple recipients of list PARKINSN
>Subject:        sex!
>
>To all readers,
>
>Now an answer to the sex question is coming, oldfashioned or post-modern. I
>have some knowledge of this matter from experience and from conversation
>with co-PWP's. Some years ago I attended a meeting of the Dutch patient
>organisation were sex was the topic to be discussed.
>At the beginning of the treatment with dopamine quite wild stories were
>going on about male patients who after their first pill couldn't leave the
>nurses alone. If those reports are true this was possibly caused by the
>very high doses given at that time. But a more modest aphrodisiac effect of
>L-dopa was reported by man and woman alike.
>I myself have this experience. Some people had been surprised by their own
>reaction. They experienced a diminished desire before starting with meds. I
>think it is important that all users of L_dopa know about the possibility
>of this effect. Once I was told a marriage broke down while the husband
>couldn't bear the increased demands of his PD wife.
>PWP'S  differ in this respect also. Not everyone gets this pos. effect. On
>the contrary some told that all their sexual feelings had disappeared and
>did not come back with L_dopa. This can be a cause of impotence.
>Knowing some things about the relation between sex-drive and neurotrans-
>mitters it is plausable PD itself diminishes sex-drive. It has something to
>do with cholinergic vs. anti-cholinergic stimulation, two things that don't
>go together. Sexual functioning needs anti-cholinergic activation and a PWP
>without meds has to much cholinergic stimulation.
>The disappearance of sexual desire might be in some people a primary PD
>symptom. Needless to say impotence can have other causes and can exist
>without the absence of desire. If the latter is true, it is definitly
>caused by something else. In that case a visit to a doctor should be
>advised.
>Yet another point. As soon as a PWP is not longer a junior among us but is
>raised to the status of having real on and off periods, sexual functioning
>is only possible when on. Some adaptation and choosing other times for sex
>can be helpfull. Another problem is motor impairment. Those problems can
>mostly be solved by open discussion and creative fantasy.
>I hope nobody is too shocked by this Dutch treatment of the topic.
>
>                                          Ida Kamphuis, Holland
>
>
Ernie Peters <[log in to unmask]>