Hawaii Conference

Various postings about the Hawaii conference - no specific order

All in all, I met some
really nice people; one lady and her husband dropped me by the
airport; there was a lady from Louisiana (who was there for her
daughter who pulls), and another from Ohio. Both Dr.s were excellent
speakers and I'm glad I went. The auditorium was comfortable and air
conditioned and we all were provided with a free lunch which was more
than adequate and I was most pleased at how they wanted to work with
the youngsters in attendance. It was a good day.

00000000000000000000000000

I was up at 5:00 to catch the plane at 6:20 to Honolulu. I enjoyed
meeting people with trich; mostly lash and brow pullers, but three or
four were hair pullers. (Parenthesis are my personal comments and
observations.)

He said there is no known cause for ttm; although they have some
ideas. He said that we should not blame ourselves and have guilt
because there is no evidence to support the view that something is
wrong with ttmer's psyche's. Even though thought to be biological; we
need behavioral modification therapy.

He said we should not suppose there are underlying emotional conflicts
that cause ttm. Don't spend time agonizing to have an insight into
what we do; after all it's not life threatening. He recognized how we suffer from the disorder and realizes that it's stealing our lives, even though it's not life-threatening.

He said when the urge to pull is there; to do something else. Do
something self-enhancing (like some of you do when you baby yourself).

He said to find another pleasurable sensation (he didn't recommend
anything; (I was afraid he would say to eat; chocolate cake, maybe),
something you can do with your hands, i.e., sew, knit, squeeze a
kusch ball, etc.

He said to set easy goals, i.e., not pulling in car to/from work and
to reward yourself for each success; no matter how small. That we
must always say to ourselves: I can cope with this.

more next post

0000000000000000000000000000

These are all my personal observations:

During the questions & answer he asked if anyone wanted to make a
comment and I mentioned about the wealth of information on the
internet; especially this bb and JK's ttm mailer. I told him that I
personally have experienced no pulling sprees since beginning the diet
and he asked me what was a "pulling spree". I explained that I used
to read a book for four hours and pull for four hours and that I no
longer do that; that many days I only pull one or, if it's a bad day,
maybe five or six hairs.

The behavioral therapist said that JK's theories and ideas are
untested and unproven. He said if he thought JK's diet would help his
patients, he would recommend that they all not eat peanuts
or licorice.

I could tell he was not happy with my comment about JK's diet and no
further discussion was made about it. He recommends behavior
modification changes and medications. That's it.

Personally, I don't know if JK has helped other people or not; I just
know that the diet has helped me. My bald spot is filling in very
nicely and my hair is growing. I am very grateful to John Kender's
diet.

On the plane home, I remembered that it was mentioned that Pfizer
Pharmaceutical Company paid these two Doctors to come to this
conference. And then I realized that they were there to further their
own cause: that is medications and behavior therapy treatments.

000000000000000000000000000000000000000000000

He mentioned how we can use imagery and self-hypnosis (although he did
not go into hypnosis, self or professionally induced). He said he
sends those patients to a colleage for hynosis.

From that point it was about different medications we can take and he
mentioned several, including one new one He recommended support
groups and to educate ourselves as much as possible about ttm.

How to begin: Behavior Modification and Medication!

He recommended that we practice self awareness and perhaps keep a
journal or wear a bandaid or some help. He said not to be a hero when
we set goals and try to attain something we will never succeed as
keeping; easy goals will increase self awareness.

Some people are just not motivated to stop pulling. In your journal
keep a list of reasons you want to keep on pulling and also list the
inconveniences of pulling. Build kids motivation by using rewards
even for the effort. Rub the child's head and help them to find an
understanding buddy too help them with awareness.

Dealing with disappointments. He said we shouldn't use the word
"relapses" and not to get bogged down by disappointments when we don't
reach our goal. Be aware of where you are when you pull the most and
where you are when you pull the least. Keep your hands busy fiddling
with something else, kusch ball, etc., and TO EXERCISE.

To remember that setbacks are opportunities to learn.

part two
000000000000000000000000000000000000000

Anyway, on to Xxxx's question about the Hawaii conference. First of all,
the way it all started was a woman in Hawaii, through some contacts, got
Pfizer to pay for travel expenses for a few speakers. When Pfizer agreed to
this, they did not know who the speakers would be. Then the woman approached
TLC about helping out, which meant that TLC did a mailing to people on its
mailing list in Hawaii,the west coast, and the Pacific Rim. We also
mentioned it in our newsletter and on our web site. The TLC Board also
discussed who to recommend as speakers, and we chose Dr. Richard O'Sullivan
and Dr. Charles Mansueto because they are both excellent speakers with a lot
of expertise on trich, and they present very well together, as anyone who has
seen them can attest.

If they brought their spouses, that was not paid for by Pfizer. I know that
they both were kept pretty busy. Did other presentations and met with
doctors all over the Islands, and did a TV show, so they didn't have a lot of
time to enjoy where they were. Again, they did all this because of their
dedication to this cause.

I don't believe they could deduct what they did as volunteer work. I have
deducted such expenses myself, and you can't deduct for time spent. You can
deduct for travel expenses, but in this case they didn't incur any. They
lost whatever income they would have made from patients on the days they were
away. Granted, they got a trip to a very nice place for free (at least for
themselves) but again let me stress that these two makes TONS of
presentations on this subject every year, and this is the first time it's
been in an exotic locale. And again, the Hawaii locale was not chosen by
these doctors or TLC, it was held there because a woman who lives there had
the initiative to make a conference happen in HER part of the world.

As for the doctors not being unbiased if their trip is paid for by a drug
company, well Dr. Mansueto is a behavior therapist, so he doesn't prescribe
drugs. Dr. O'Sullivan is a psychiatrist who has done studies on meds for
trich, and treats people with meds, but he and other doctors in the know have
stated (as they did in Atlanta) that meds are not a magic bullet for trich,
should not be the first thing tried, especially in the case of children, and
if tried, should not be tried alone; they are much more effective in
combination with other methods. The other psychiatrist who spoke in Atlanta
said that in his study of Effexor, the only subject that had a remission
longer than 6 months turned out to be on the placebo. These people are
scientists, who do impeccable work and report the results, whatever they may
be. The pharm companies expect no less.

I hope this addresses your concerns. I wish there were more studies
being done on alternative methods, but so far trichsters seem unwilling to
pay for them. TLC is doing its best to find other sources of funding besides
pharm companies, but most foundations have never heard of trich or don't
realize how big a deal this disorder is. Until hair pullers get the word out
so people understand how big a deal this is and how many people are affected,
we are stuck with the status quo. That status quo would be a lot bleaker if
it were not for these dedicated professionals.

000000000000000000000

I do want to clarify one thing Yyyy said though: Pfizer did not "pay
the doctors to come to the conference." They paid FOR the doctors to
come to the conference, meaning Pfizer paid their travel expenses,
which allowed this conference to take place. Big difference. These
doctors do not get paid for speaking at these conferences and
retreats, yet they continue to do it several times a year, year after
year. Why? Because they CARE about hair pullers and want to help us.

Being scientifically trained, they believe the best way to help people
is by methods that have been scientifically tested. They are concerned
about people going down the wrong path, or even dangerous paths, as
too much potassium can be. They are correct that the JK diet has not
been scientifically tested; John Kender himself acknowledges that.

I also know that Dr. O'Sullivan, one of the speakers in Hawaii (and
Atlanta, and every retreat since the beginning, and so on) has
contacted a yeastologist about looking into the validity of the JK
theory. He's not blowing it off. But in a conference setting, they
want to make clear what is scientifically known versus what is theory.
To do otherwise is a disservice to the attendees.

Yes, there is definitely more to the solution than just meds and
behavior therapy -- there better be! But if you want studies on
alternatives to be conducted, WE have to fund it. Studies take money,
and unlike meds, nobody stands to make money from the JK diet. That
is why TLC started a research fund, so WE can start getting studies
done that we want. TLC wants to fund studies of dietary factors. See
TLC's web site for information about the research fund and how you can
contribute.