Absolute Horror

New Kupek oddities album

I'm listening to the awesome new Kupek tracks that Bryan Lee O'Malley (of Scott Pilgrim fame) recently posted on radiomaru. Everything Bryan does is geeky-sweet, cheesy and sincere like a cheese and chocolate covered banana, but better. Check it out.

Trich Talk

Last weekend, I was in Washington D.C. for the 14th Annual National Conference on Trichotillomania & Skin Picking. This was my second conference so far and once again I was very impressed by the scientific presentations and re-energized to give my time and energy to help my fellow trichsters. It was also really great to see some of the people I'd met at past events.

Actually I went out a day early to do museums, and since it was an ugly day outside, I was glad spend most of the day indoors. Have to say, love the Smithsonian and will have to get back out there when the American History museum re-opens.

The first workshop I went to was Mass. General's, and chair of the TLC Scientific Advisory Board, Nancy Keuthen presenting on the recent neuroimaging work she's been involved in. I forget most of the details and it was pretty heady stuff to present that late in the evening, but the gist of it was that they did some brain imaging of trichsters doing some standards tests designed to stimulate the striatum and hippocampus and compared them to the previous OCD results. Unlike the OCD scans, the trichster scans the cortico-striatal connections seem to be working normally, but really this is just opening the door to the possibility of doing more brain-imaging studies like this. There's still so much to learn about how trich works in the brain.

The next morning, I went to hear David Pauls(from Harvard Medical) and Allison Ashley-Koch (from Duke) talk about the recent genetic research of trich and give a state of affairs. Pauls began with a broad outline on why genetic research could provide important information on how and why trich seems to travel in families and what methods can be used for doing genetic studies. He made an excellent case for using genetic studies to understand what factors could contribute to trich and rather then looking for some sort of gene therapy or advocating in vitro "treatment" of trich, he suspects that a greater understanding of what genes increased the risk of developing trich could help people in the future to reduce other contributing environmental factors. I found that very reassuring given recent controversy around Al Mohler's recent blog entry. He also announced that he was help organize an international trich genetic bank that could warehouse trichsters DNA and make it available to reputable scientists wanting to do research on trich. Interestingly he also mention that they were going to get DNA collected from the Afrikaner population in South Africa, which is both a fairly genetically isolated gene pool and I would think certainly had environmental stressors that could exacerbate trich.

Ashley-Koch then discussed last Fall's widely reported research on the connection between trich and the SLITRK1. I think one of the things I missed when this news came out was that the this was the FIRST real connection made between a metal "illness" and a genetic mutation. It is known that the SLITRK1 gene has a large influence on the brain and in particular, neurite outgrowth, connecting neurons to each other. The other thing that was very interesting was that this mutation appeared to be an "old" mutation and appeared in the DNA or other species such as mince, cows and dogs. And while the mutation was found only in 5% (2 of the 44 people studied) of the population they studied, it pointed at an area in the genome that definitely warrant more studies. And Duke's research is continuing. I had already decided to join the study and try to get as many of my family members to join as well. Conveniently enough, the project coordinators were available to take blood and DNA, so it felt good to be able to get that done right then and there.

In the afternoon, I went to hear psychologist Renae Reinardy talk about the gaining more awareness between the connection between our emotions and psychical state and our pulling, these are things we talk a lot about in my support group, but it was still nice to hear a fresh perspective. She pulled apart what people might be feeling before, during and after pulling their hair or picking their skin, asking people to identify for them selves what they might be feeling, frustration, tension, boredom, anxiety, indecision, excitement, anger, discomfort, pleasure while pulling, relief while pulling, "in a trance", pain while pulling, and afterwards maybe a sense of relief, accomplishment, more relaxed, more tense, guilt, anger, tired, sad or indifferent. She also encourage people to look for thought patterns and ways our pulling could be a maladapted thermostat-like way to bring use down or up to a more comfortable level. That's certainly part of my experience and having this awareness has helped me develop strategies like my meditation practice, better sleeping habits, reducing my caffeine intake, and reaching out to others for support more. She also strongly recommended assertiveness training which was a new idea for me.

Next I went to hear the Joe Garner from Purdue give an amazing overview on just about everything he's learned about trich and it's neurobiology. It was a rather involved talk to say the least, but he was able to cover an amazing amount of material in the time given. He started off with the take away messages that scientist are now developing a pretty robust understanding of how a variety of Abnormal Repetitive Behavior are produced by the brain, but that there's not a much research specific to trich though what there research there is seems to fit the patterns, while the differences may help to explain what trich is biologically and psychologically. In reviewing the data out there, the evidence seems to support the idea that trich is a disruption in the prefrontal and premotor cortico-striatal loops, or the circuits that that facilitate goals, are sensory stimulated, and that control patterns of movement. One idea that he mentioned that I hadn't heard about was the anarchic hand (or as wikipedia cites, DR. Strangelove Syndrome!) where one hand acts automatically which is interesting because I almost always pull with my left hand and around my left ear. But all the unknowns about trich are also interesting, like why (or does it) affect women more then men? Why is a similar barbering or grooming behavior seen across the board in many captive animal populations and nearly 100% of primates? And how far back in the evolutionary chain does this mutation go if it's part of the more "privative" basal ganglia part of the brain? Lots of room for new research, and Garner just submitted a proposal to look at multiple species across the evolutionary chain and compare genes such as SLITRK1. Exciting stuff!

After dinner I went to a men's forum that psychologist David Kueler organized. Even though there's a man that regularly attends my support group, it was nice have the opportunity to meet some other male pullers, though actually only two out of the four other men that I knew were attending the conference came to the forum. Yet another reminder of how much more needs to be done in raising awareness and building community.

Then on Sunday, I went to the research symposium, which was a round-up on the recent Trich Impact Studies. It was stressed many times how amazing it was that these studies were turned around so quickly and how important they could be in attractive further research dollars and legitimacy. Al so significant was the scales that were developed to measure the range of impact trich has on our lives and tools to categorize pulling behavior in a scientific way. Interesting data that they collected was that the largest majority of people reported pulling from their scalp and eyebrows. They also reported feeling unpleasant urges before pulling, feeling a bodily sensation, being for the most part aware of their pulling, and feeling anxious after pulling. All stuff I can concur with. Also interesting was that most people reported that when they sought treatment, most often the treatment provider was not much of an expert and treatment was very rarely effective and often was damaging. Strangely enough many people also reported that they had been prescribed SSRIs for treatment, even though there's been no scientific evidence that SSRIs are an effective treatment for trich. But what was encouraging is how many and how quickly published papers were coming out of this work and how these results and tools could be used for future studies.

There were also several sessions I wish I could have attended if I could have sent my clone.I was particularly sad that I missed was a presentation from one man whose Buddhist meditation practices was helping greatly in his recovery from trich. Sounds very similar to my own experience and I would have loved to compare notes. Also Doug Woods gave a talk on "Separating Snake Oil from Penicillin", which was funny because I had just seen a sample of the first Penicillin at the Smithsonian. I thought it was a very important question, sense it seems to me that many pullers are eager for anything that might provide some relief, even if it's only supported by anecdotal evidence and may or not work.

Good stuff all around and I'm really glad I went. All the people associated with TLC, the pullers, the picker, the researchers are all such amazing people and I'm very glad to have found them. And of course, none of us would have come together without the efforts of Christina Pearson. Makes me want to continue to help out it whatever small ways I can.

Sissy Spacek & Cam Archer take on "Pull"

indieWIRE: indieWIRE INTERVIEW: Cam Archer, Director of "Wild Tigers I Have Known"

I recently came across this interview where the Santa Cruz native, indie filmmaker, Cam Archer, talked about his next project being about a woman with trichotillomania. He's already got Sissy Spacek signed up for the lead which is a huge coup. I haven't seen any of his films but just his interest in the subject of trich is intriguing.