Talk With Your Doctor About TD Signs, Stigma, and TreatmentJeff, TD Ambassador

I’ve taken many antipsychotics over the years, since I was 17, so it’ll be 50 years. I woke up one morning and realized my cheeks were puffing in and out uncontrollably. When I looked in the mirror, I was horrified by my image. I thought I was getting muscle spasms in my face from doing isometrics and leg lifts. After a while, the puffing in and out of my cheeks turned into grimacing, and I was somewhat relieved because my face was acting less violently. But I knew that grimacing was a symptom of tardive dyskinesia (TD). My doctor had mentioned TD at times before I was diagnosed with it. I had a friend that had TD, and she would roll her forefinger with her thumb. Grimacing was one of the TD symptoms that I was aware of. I had a colleague who grimaced just like how I was grimacing then.

Before I had the symptoms, my psychiatrist at the time told me that if I continued taking the medicine that I was on, I was going to have severe physical problems in the future. He wanted me to change medications. When he told me that, I wasn’t worried about a few years in the future because I was doing so well. I was teaching adult basic education classes for a literacy program, which was a paid position. I was a staff writer for 2 college newspapers. I was getting recognized for my volunteer work with International Friendship Organization. So, I didn’t want to risk losing that productivity and how well I was functioning in the community—and feeling comfortable in the community. I felt really great. That was the best of all the antipsychotics I had taken. I was glad that my psychiatrist let me stay on it and gave me the option to make my own choice of doing that.

When I grimace, my mouth opens wide, so sometimes people think I’m yawning. When I’m walking, I’m more likely to grimace. And my head is tilted, so when I’m walking, usually I have to hold on to something because it helps stabilize me. A lot of times, I’m walking with my hat in my hand, if I don’t have my work bag, because I can’t have my hands free due to the movements. I noticed that my strides are shorter, and it’s more of an effort to go around the corner than it was a couple of years ago. I can’t stand for long periods of time; I sort of get pain in my back. I do Tai Chi now, and if I skip a day or two, my breathing becomes very labored. I also have writer’s cramp, and a lot of times when I write, not only can’t others understand it but I can’t either. My fingers sometimes are painful. I have to sometimes use a thicker pen to feel comfortable writing.

But my TD symptoms don’t stop me from being in social settings or working. Years ago, because my breathing was so labored, I really couldn’t hold a job. It was too much effort before I started doing Tai Chi and other exercises. My head used to shake all the time before I started my Tai Chi discipline, but it removed that completely. I used to walk on the tips of my toes at one point, which was very frustrating. So, if I went to an eatery around the corner, I would have stopped about 3 or 4 times before I reached my destination because I was so exhausted.

For treatment of TD, at that time, there were few treatment options. Eventually, with my neck problems, I had injections of botulinum toxin, but unfortunately, it made my neck weaker. I felt like it was too potent, so I had to stop. I thought I had to live with this the rest of my life. I didn’t think that it was going to improve.

What really helped me was when I found the Tai Chi class by going to a dystonia group meeting. I was very self-conscious about all these movements, but when I joined the dystonia group, I saw that other people have similar movements. I was able to accept my condition after attending a few monthly meetings. I felt more relaxed about being out in public. Then, the dystonia group hosted a Tai Chi presentation, and the organization that did the presentation was from my neighborhood. So, that was a real blessing.

Besides Tai Chi, I do physical therapy exercises that are for people with Parkinson’s disease. I also incorporate some isometrics in my daily discipline, and I have fewer movements. When I read the Bible, I’m more relaxed and it calms me down, so I have less movement in my face. I try to stay away from foods with chemicals, like fat-free or diet foods, and I changed my toothpaste to a natural brand. I think I’d be grimacing much more today if I continued using those products. Now, we have new medications that could stop these movements that we didn’t have before. So, it’s important to explore different options. What works for me may not work for someone else.

My TD was caused by the old neuroleptic antipsychotics, but the new ones—the atypicals—can cause TD as well. So, if you see any difference in your movements or any stiffness in any parts of your body that wasn’t there before, and you’re taking an antipsychotic, you could be developing TD. You may get it in multiple places eventually. When you talk to your doctor when you have the first signs, ask what other parts of the body it can affect. And ask, “Can you help me with the stigma that I’m going to face?” Other people don’t know what it is, and people can stare—especially little kids. When I traveled by public transportation, toddlers would turn around and stare because they see that the movements are not normal. Some adults also stare for long periods of time. It’s very uncomfortable, but it can be dealt with.

I would tell others with TD that it really doesn’t define who you are. There are treatments and strategies that help you deal with it, go on with your life, and enjoy your life. When you have some success, it builds your confidence. I would encourage others with TD to try to be in the community and not just stay home because it’s a waste. You can waste years of your life staying at home. Instead, talk to your doctor about how to deal with the social stigma and about medicines that could really make a dramatic change. You may still have to deal with discrimination and prejudice, but you have to say to yourself, “These people don’t know you.” You deserve to have a productive life in the community.

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