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The Bystander: A First-Person Perspective on Being Blind to Tardive Dyskinesia

February 26, 2019
Craig Chepke, MD, headshot
By Craig Chepke, MD
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The opinions expressed by Psychiatry & Behavioral Health Learning Network bloggers and those providing comments are theirs alone and are not meant to reflect the opinions of the publication.

In the “TD360” presentation at the 2018 Psych Congress meeting, Dr. Rakesh Jain passionately challenged the audience to “not walk away” from acknowledging that we all have patients with tardive dyskinesia (TD). This struck close to home for me because in the past, I didn’t give TD the respect and recognition it deserves. That changed for me 3 years ago, when I began working with a young man with schizophrenia whose TD was unmistakable.

We had been meeting monthly for a year when his father suddenly passed away. He inspired me to learn as much as I could about TD and how to treat it. I couldn’t give him his father back, but I could at least try to give him the dignity of control over his body back.

Treating his TD with a vesicular monoamine transporter 2 (VMAT2) inhibitor benefitted him in profound ways I didn’t expect, and it opened my eyes to the true prevalence and impact of TD. After that, it became my crusade to look for TD in my practice more rigorously than I ever had. I uncovered more diagnoses of TD than I would have thought possible based on my preconceived notions of motor side effects of atypical antipsychotics being “comparable to placebo.

Over the past 3 years, I’ve never stopped studying TD or trying to educate peers about the need to find and treat it. With extensive study and regular practice, I came to think that finding TD was simple—that it was just the decades of lacking effective treatments that made us stop looking for it, and therefore assume it was much rarer than it is. I concluded it should be easy to find the TD that had been unrecognized or lumped into the generic label of “extrapyramidal symptoms (EPS).” However, a recent experience showed me that seeing TD can be hard, even for people who have made a commitment to look for it.

My wife and I were in California recently for a meeting I was attending. On a Saturday morning, I woke up at my customary 4am Eastern time, and took my laptop down to the hotel lobby so I could get some work done without bothering my wife. Since it was the middle of the night Pacific time, I would periodically hear people in various states of inebriation coming in for the night. The seat I had chosen put my back to the lobby, and I began to hear hotel staff arguing with someone who was shouting back obscenities at them with slurred speech. He was begging for a room to stay in and wouldn’t leave, despite the staff’s best efforts.

As the situation escalated, I changed seats to face towards the lobby, and I saw that the conflict involved an African-American gentleman in his early 70s. From his clothing and hygiene, he appeared homeless. He had stubbornly sat down with his back to a wall, with 3 staff members standing around him. The youngest of the 3 employees started poking fun at the man. He ridiculed the grandiose statements the man would make, such as offering to take them for a ride in his helicopter, or that he made $100,000 a day, and would get them fired if they didn’t give him a room. The taunting angered the man, and he stood and seemed to make some aggressive postures towards them. One large gesture with his arm grazed the hand of one of the desk agents. This made the youngest staff member antsy, and he pushed the man to the ground. He said that the man assaulted his coworker, and now they would call the police to press charges and take him to jail.

It was at that point that I really looked at the man, and I noticed something stunning. The man’s tongue irregularly darted out of his mouth. His face contorted into grimaces intermittently. He wasn’t making aggressive postures—he was having choreiform movements that caused him to accidentally touch the staff member. This man had obvious TD.

Up until then, I had been a passive observer, as much a bystander as if I had been watching a television show. I had not critically questioned the bias in my initial assumption that he was “just some drunk guy” acting up and a problem for the hotel to deal with. I recognized that I was the only person present who had the ability to recognize that visible sign of long-term antipsychotic use, and given his actions, likely severe mental illness. He was about to get arrested, and probably not peacefully. Typically, TD is the great betrayer, exposing one’s hidden mental demons for the whole world to see. But in this man’s case, his TD could be his redeemer, if I took responsibility and became his advocate.

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