For more than two decades, Patrick Hendry has worked as a peer supporter, helping those affected by mental illness. Since 2009, he’s served as vice president of peer advocacy, supports, and services for Mental Health America (MHA).

The first signs of tardive dyskinesia

Patrick was driven to action after seeking help for symptoms of an undisclosed mental illness. A doctor prescribed a newer atypical antipsychotic medication, which Patrick took with great success for several years. “That medication was the first effective medication I had ever taken,” Patrick wrote in an MHA blog post. “After years, I had finally found something that worked and seemed to have no serious side effects.”

But in his sixth year on the medication, Patrick began showing signs of tardive dyskinesia. This neurological movement disorder affects about 1 in 4 people who take antipsychotic (neuroleptic) medications. People who take certain medicines for gastrointestinal and neurological conditions may also develop this medication side effect.

The condition causes involuntary facial and body movements. Symptoms of tardive dyskinesia include rapid blinking, grimacing, tongue thrusting, and lip-smacking. “In the sixth year, I was sitting in our living room one evening with my wife and she looked at me very strangely and said, ‘Why do you keep sticking out your tongue?’” Patrick recalled in the blog post. “My first reply was, “What are you talking about?” and then I realized that my tongue was moving and twisting involuntarily in my mouth.”

Patrick and his wife have worked in the field of mental health for decades. They quickly recognized that he was experiencing tardive dyskinesia as a medication side effect. His psychiatrist assessed his symptoms and made the same diagnosis. “…(I) was told that it was almost certainly permanent and could be progressive,” Patrick wrote in his blog post.

Experts aren’t sure why some people who take certain medicines develop tardive dyskinesia, while others take the same medicine without problems. The medications most likely to cause tardive dyskinesia are dopamine receptor-blocking medicines (dopamine antagonists). Dopamine is a chemical (a neurotransmitter) that carries messages between nerve cells, the brain, and the body. Experts think some people who take dopamine antagonists become overly sensitive to any amount of dopamine. This raises their risk for tardive dyskinesia.

Living with tardive dyskinesia

Once tardive dyskinesia develops, treatments focus on changing the medication causing the problem. “Signs of TD may remain even after stopping the medication that caused them in the first place,” Patrick cautioned in a July 2020 interview with the HealthWell Foundation. Patrick chose not to stop his medication. “Because of its permanency I decided to stay on the antipsychotic that was now known to cause TD in some people,” Patrick shared in the MHA blog post. “To treat the TD symptoms, I was prescribed an older medication that is frequently used for movement disorders and it worked. I was nearly TD symptom free.”

In his role with MHA, Patrick has traveled across the country meeting with people affected by tardive dyskinesia. “Most of the people I met with were never told that TD was a possibility when they were prescribed antipsychotic medications for their mental health conditions. In fact, frequently it took multiple doctors to correctly diagnose TD,” Patrick said in the blog. “Many of us have tried other medications in the hope that the TD symptoms would abate - but without luck. Many of the people I spoke with, despite the disabling effects of TD, still chose to take the antipsychotic medication that caused the condition for fear of the return of psychosis. These kinds of decisions are very personal; each individual has their own perspective on the use of medications.”

In the HealthWell Foundation interview, Patrick shared some of the challenges he and others face while living with tardive dyskinesia. “The general public may mistake symptoms of TD as having a developmental disability,” Hendry said. “This can lead to a sense of embarrassment, anxiety, social isolation, or feeling stigmatized.”

Serving as a beacon of hope to others

Part of Patrick’s mission — and a goal of MHA — is to raise awareness about this medication side effect. “We want to make sure that providers stay updated about the potential ramifications and lesser-known side effects of these antipsychotics so they, and their patients, can share in decision-making around behavioral health treatment,” Patrick told the HealthWell Foundation. “When patients are well informed and participate fully in treatment decisions, they have better outcomes.”

There’s also reason to hope. As Patrick noted in his blog post: “There are two new medications on the market that were specifically designed for TD, and hold great promise for the hundreds of thousands of people living with this condition. The immediate problem is finding payment methods that will allow people — often living on disability and Medicaid or Medicare — to afford the new treatments. New prescription assistance programs are becoming available to help.”

Patrick has been able to control most of his symptoms (which he described as “intermittent and fairly mild”) with an over-the-counter medication. He wrote in his blog, “…I have been lucky in that it has not worsened with time.” Mornings are the worst for Patrick. “…I experience problems with my tongue wanting to protrude out of my mouth, and there is a stiffness that affects my gait. I walk my dog every morning before dawn and according to my wife I walk like I’m drunk.”

The condition has also affected his work. In his blog, Patrick shared, “During the day I experience a lack of fine motor control in my hands which sometimes makes it very difficult to type. For me that can be a big problem because much of the work I do involves writing.” Still, Patrick was able to write a book, Common Threads, Stories of Survival and Recovery from Mental Illness. He also produced a documentary called From Asylums to Recovery: The History of the Battle of Civil and Human Rights for People in the Mental Health Care System.

In recognition of Patrick’s years of dedication helping those with mental illness, the National Council of Behavioral Health recognized him with the Reintegration Lifetime Achievement Award in 2014. Two years earlier, Patrick received MHA’s highest honor, the Clifford W. Beers Award.

Today, Patrick perseveres in his quest to help others. “It’s important for everyone to understand that TD is not linked to mental instability,” Patrick said in his interview with the HealthWell Foundation. “Having TD can be a lonely experience. A sense of community becomes increasingly important.” If you or someone you love has tardive dyskinesia, you can find virtual support through the Inspire Movement Disorders Support Community.

Sources

• Tardive dyskinesia. Baylor Medicine. 2018.

• Tardive dyskinesia: Shedding light on a serious medication side effect. HealthWell Foundation. July 2020.

• I have tardive dyskinesia, but I am one of the lucky ones. Mental Health America. 

• Patrick Hendry presented lifetime achievement award. Mental Health America. 2014.

• Vice president of peer advocacy, supports and services. Mental Health America. 

• Tardive dyskinesia. National Alliance on Mental Illness. March 2019.

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