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

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.

I got up and pulled aside the manager to request he call to have the man taken for a psychiatric evaluation rather than to a jail, and told him I would try to calm the man down until responders came. I introduced myself to the man and noticed I didn’t smell any alcohol on his breath, as his slurred speech had made me assume there would be. I told him I am a psychiatrist, and he responded that he was a doctor too, quizzing me on the anatomy of the head and neck. I found he actually did know the names of muscles and ligaments of the neck better than I did, so many years removed from anatomy lab! He explained he served in Vietnam for 2 years as the only African-American coroner at the time. I asked if he saw a Veterans Affairs (VA) psychiatrist, which he said he had. On a hunch, I asked if he’d ever been on Haldol, and he told me he took it for years, but that he “didn’t need that anymore.”

The more I talked to the man, the more he calmed down. He continued to tangentially verbalize delusional beliefs, such as personally performing the autopsies of Elvis Presley and a number of other celebrities, but he also opened up about his life too. He talked about the hard times he had fallen on that led him to look for refuge in a different hotel room every night. He had been sleeping in his car since his daughter kicked him out of her house and got a restraining order against him. About a week before the night I met him, he couldn’t find where he had parked the car, and had been wandering the city ever since.

I brought up his movements and told him what TD is. I wanted him to know there are medications that can treat it now, and he asked me to write them down so his doctor at the VA could prescribe one, because he is a 100% service-connected disabled veteran. I gave him the names of the medications on a hotel notepad and told him that even if the doctor said it was too new to get it, he actually could. I said it would just take a lot of paperwork like anything at the VA, and that made him laugh. Shortly after that, two police officers arrived at the lobby, and when they approached the man, they did so deftly and gently, obviously used to working with people with mental illness. They never treated him like a criminal, and when they asked if he wanted to go with them to the hospital, he immediately agreed and walked out peacefully with them.

Well into the era of atypical antipsychotics, TD is not as rare as we all wish it was. But seeing TD is hard because we live in a society in which it’s easy to become a bystander to everyday life. In hindsight, it’s apparent how identifying TD in this unusual situation made a clear impact on this man’s life. But the opportunities each of us has to find TD in our practice every day are no less consequential. Simply by recognizing TD where it exists, we can give a voice to those who are afflicted by it.

We need to start by choosing to educate ourselves on TD and admitting that it does exist in our practice more frequently than we’d like. Unlike Parkinson’s Disease, which has a famous personification in Michael J. Fox to advocate for its recognition, TD has no such singular humanizing embodiment. Solving the problem of unrecognized TD is going to require everyone in the mental health field to not only be champions for people with TD in our clinics, but everywhere in the world.

Craig Chepke, MD attended the New York University School of Medicine and completed psychiatry residency at Duke University. He is board certified by the American Board of Psychiatry and Neurology and is a Fellow of the American Psychiatric Association. Currently, he is in private practice in Huntersville, NC and specializes in neuropsychiatry and treatment-resistant/severe persistent mental illness. Dr. Chepke serves as an Adjunct Clinical Professor of Psychiatry for the University of North Carolina Medical School’s Charlotte Campus and is the medical director of Timber Ridge Treatment Center, a level 3 residential facility for adolescents. He is a member of the CURESZ Foundation’s Clozapine Experts Panel and is as a member of the International Parkinson and Movement Disorder Society.

The views expressed on this blog are solely those of the blog post author and do not necessarily reflect the views of the Psychiatry & Behavioral Health Learning Network or other Network authors. Blog entries are not medical advice.