by Jeff, Tardive Dyskinesia Patient Ambassador for Neurocrine Biosciences, Inc.
Nearly 60 million adults in the United States live with a mental health condition. Some people living with a mental health condition may also develop or already have tardive dyskinesia (TD)a persistent involuntary movement disorder associated with the use of antipsychotic (AP) medications and characterized by uncontrollable, abnormal, and repetitive body movements.
I was diagnosed with schizophrenia when I was 17, after suffering a nervous breakdown and being hospitalized for a few weeks. My psychiatrist prescribed AP for my schizophrenia, which helped, but after several years I was diagnosed with TD.
I wanted to share with the MHA community five things I wish I knew before I was diagnosed with TD.
1. Understand the symptoms of TD
TD is associated with the use of PAs that may be necessary to treat people suffering from mental illnesses, such as bipolar disorder, major depressive disorder, schizophrenia, and schizoaffective disorder. The condition affects about 600,000 or more people in the U.S. TD movements can affect the face, torso, extremities, and fingers or toes.
I was not surprised to be diagnosed with TD because my psychiatrist had informed me of the possibility of TD due to my AP treatment, but I was not prepared for some of the physical symptoms I began to experience.
I woke up one morning and my cheeks were swelling and swelling uncontrollably. Then the movements turned into grimaces. TD affects the way I walk and I have trouble buttoning my shirt and putting on my belt.
2. Learn the impact TD has on your daily life
I wasn’t prepared for how others would react to my uncontrollable movements, how TD would make me feel, and the impact it would have on my routine. Kids stared at me on the bus because of my facial movements. In restaurants, I feel like I often sit far away from other customers because I think people often conclude that something is wrong with me. I try my best not to take these reactions too seriously, but it can be difficult.
This is why it is important to raise awareness about TD, as it is not only important for family members and those living with the condition, but also for the general public to better understand and feel more comfortable when experiencing someone with TD.
3. Find support and build your community
After receiving my TD diagnosis, my psychiatrist suggested I join a movement disorder support group. Shortly after I started going, I began to learn to accept my condition. It helped me realize that I was not alone because other members of the group were experiencing similar symptoms.
4. Keep your mind busy
I find solace in music, listening to records and watching movies. I am also very grateful to be a TD patient ambassador and be able to share my story. By sharing my story, I am able to educate and equip others and have a great impact on people around the world, which shows me that I have a purpose.
5. Talk to your doctor
I personally see my neurologist once a year because I think he assesses my movements better. It is important for providers to address the symptoms of TD, but also the social and emotional aspects of living with TD. If you think you have TD, even mild symptoms, see a trusted provider and tell them about your uncontrollable movements. Learn more about TD, living with TD, and how to treat TD by visiting TalkAboutTD.com.
This post was sponsored and developed by Neurocrine Biosciences, Inc. Jeff received compensation from Neurocrine Bioscience, Inc. for sharing his story.
© 2024 Neurocrine Biosciences, Inc. All rights reserved. CP-TD-US-1678 10/2024
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