Real-World Hoarders and Obsessive-Compulsives: A Conversation with an OCD Expert

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Michael Cogliantry

When I called to interview Dr. Michael Jenike — one of the world’s leading experts on obsessive-compulsive disorder (OCD) — he noted that I’d reached him exactly on the dot, and joked that I might have a touch of OCD myself. He’d nailed it. I do have a minor case of the disorder.

People with OCD have a sense of extreme anxiety related to certain thoughts or experiences, and are driven to perform specific repetitive rituals or behavior meant to reduce that anxiety. About 2% to 3% of the population suffers some form of OCD. It has been depicted on television (Monk) and film (As Good as It Gets), and more recently in the reality show Hoarders, which chronicles the lives of people with severe OCD. These sufferers may hoard items to the point at which their houses literally overflow with filth, or they may refuse to leave their homes for years, causing them to lose their jobs and relationships. They are paralyzed by their disordered behaviors, such as nonstop hand-washing or repeatedly checking to see if the stove is off.

Jenike, the founder and medical director of the OCD Institute at McLean Hospital in Belmont, Mass., has seen it all. He has made house calls to OCD sufferers around the world, from rural Georgia to Saudi Arabia. He also chairs the scientific advisory board of the International OCD Foundation, which will host a live Web event Saturday night during which people with OCD will tell their stories and offer the hope of recovery — and a bit of humor — to affected people and their families. (More on Watch a video on OCD vs. appetite)

Tune in here on Oct. 16 starting at 7 p.m. for the live event. To find out more about OCD, keep reading.

Q: How did you become interested in working with OCD?

A: I saw my first cases in the late ’70s, when I was a resident interested in geriatrics. I saw a patient [with OCD] who was fascinating. In a very convoluted way, I ended up on the Larry King show to talk about OCD. And then I had thousands of calls. There was no place in the country where OCD patients could go. I got more and more interested and saw more and more patients, and eventually shifted my research career to study it.

Q: How extreme does the disorder get?

A: You can get patients who can’t walk or talk [due to OCD]. It’s really pretty dramatic. I just came from a [patient’s] house. She’s afraid to take medication and can’t do behavioral treatment because it makes her too anxious. It really is tough — sometimes the toughest thing is just getting people to agree to do treatment.

There was a fellow whom I wrote a book with called Life in Rewind — he certainly falls into the category of the most extreme. He was living in a basement in utter filth. He was afraid of moving into the future. [His mind was filled with the idea that if he didn’t reverse any action he’d just done, he’d die.] He actually was remarkable: he’s now married and working and has two beautiful kids.

Q: You have to make house calls to see some of these patients, because they might be afraid to come out of the bathroom or the basement and will literally stay there for years.

A: Yes. I would go see this patient and spend quite few hours with him. None of the behavioral therapy or medication seemed to make much difference.

Q: How did he recover?

A: He decided [that he needed to recover], partly to honor people like me who were trying to help him. He worked out his own way, using some of the behavioral techniques he’d been taught. He basically figured out way to do his own kind of behavioral therapy. It’s very unusual for someone that sick to be able to muster the healthy part of brain [to overcome the illness]. (More on Amnesia and a Camera: Photos as Memories)

Q: What is the treatment for OCD?

The very best is the old standard, refined cognitive behavioral therapy (CBT). That is by far the best treatment and the secondary treatments are medications that affect serotonin [drugs like Prozac and Zoloft]. But the most important thing that’s often overlooked is CBT.

Q: How does CBT work exactly and how do you use it in your residential treatment for OCD?

A: At McLean Hospital, people often stay for a few months. The first thing we do is have them make list of rituals, [things they] avoid and obsessive thoughts. We start low on list with the things that cause the least anxiety and start exposure therapy. For example, touching things that cause anxiety. They get anxious at first but eventually they’ll habituate and we can move up the ladder and go to something more anxiety provoking. We keep working up until we get to the most anxiety-producing [things]. When we can get them to habituate [to those], they generally do very well.

Q: How effective is treatment?

A: It depends on who you read. If you read some of the studies, you will think 90% of people get better. But in those studies, dropouts are not included. They only analyze people who go through the whole course. If you take everybody, about 50% to 60% have a good response. If you add medication, there’s even more response.

Q: Are there any advances in treatment on the horizon?

A: There’s a lot [of interest] now in [the neurotransmitter] glutamate. It’s probably involved in a lot of different ways. We tend to use the drug Namenda [which is currently used for Alzheimer’s disease]. There are three main drugs: Namenda, riluzole and n-acetylcysteine [NAC, a supplement sold over the counter].

The theory is that there is glutamate hyperactivity in the synapse. Riluzole blocks release, Namenda acts post synaptically and NAC enhances uptake of glutamate [by brain cells called] glia. So you can cut glutamate hyperactivity via three different mechanisms.

There’s also brain surgery and deep brain stimulation where you can actually stimulate the brain in a way where you can shut down [the overactivity]. (More on ADHD: A Global Epidemic or Just a Bunch of Fidgety Kids?)

Q: What causes OCD?

A: I could give you a five-hour lecture on that, which basically means we don’t know. We know that it’s not a problem with toilet training. We know that it’s a brain-based disorder. Very rarely, it can be caused by a strep infection. It may turn out that the biggest cause is genetic. For a lot of people, it runs in the family.

Q: I’ll happily talk publicly about having been addicted to heroin, but I am usually too embarrassed to discuss OCD. Hiding it because it is shameful almost seems to be part of the disorder. Why is it so associated with shame?

A: It varies from person to person. Not everyone does have shame. In the early days, trying to get people to go on TV, there seemed to be a lot more shame. But now with all public attention to it, there’s less of that. Probably the reason for it is that you know that [the thoughts and rituals associated with it] are bizarre.

Part of your brain understands that, but the feeling part of the brain is not working so well. There’s something wrong with the connection between what you know and what you feel, and people find that very embarrassing.

Q: In the brain, then, are there corresponding problems in connection between the circuits involved in thought and those that process emotion?

A: When we stimulate OCD [symptoms] in [the brain], certain circuits are activated and those do seem to be involved in planning and worrying. However, we’re very early in our understanding of what’s going on the brain. The circuits involved go from the frontal cortex to the thalamus and up to the cingulate cortex.

Q: These are regions involved in both thought and emotion.

A: I’ve always wondered if these circuits are completely normal but are firing [too much] over time to make up for another part that is not working right. By working overtime, [this could] produce the worries. So we don’t know if the circuits we’re seeing are primarily the problem or not.

Q: Has the media attention to problems like hoarding been helpful or does it create more of a “freak show” effect that stigmatizes the disorder?

A: Hoarding is incredibly common. Now because of those shows, people are calling us all the time. When I look at the shows, I think most of them are pretty good. They clearly show the problem and show various approaches to dealing with it. I think there’s more positive than negative coming out of it. I know from doing Larry King that first time that there are thousands of people who would never have gotten treatment if they hadn’t seen that show.

Q: Are there treatments that can be harmful?

A: If you go in and hire a company to clean up while you take the person out to the movies, that will do all kinds of things [that could backfire]. One woman actually committed suicide [after this was done].

Q: How can people get help?

A: The International OCD Foundation website has lots of information and resources. And if you email me, I can help you get into treatment.

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