How tardive dyskinesia may impact you

Whether symptoms are mild, moderate, or severe, the impact of tardive dyskinesia (TD) can be significant, causing physical changes that may lead to functional and emotional changes. The symptoms of TD may also impact social well-being, such as avoiding social interactions because of uncontrollable movements.^1-3

A patient’s perspective: Raven’s TD story

This patient has received compensation. Patient image is being used with permission.

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The impact of TD is far-reaching

While TD affects everyone differently, here are some examples of how TD may impact you^1-4^1-3:

Physically

Pain and discomfort
Breathing difficulties
Walking difficulties

“I always feel like I’m running short of air, so I either talk lower or […] I end up gasping for it.”

- Robert

Functionally

Difficulty writing
Speech problems
Difficulty eating and swallowing

“If my movements are really bad then I notice that I get a little strangled at times if I’m eating or drinking.”

- Tasha

Emotionally

Stress
Embarrassment
Isolation

“They’ve greatly affected my balance, affected the way I eat, the way I sleep, my social interactions. It’s an embarrassment to me; it’s an embarrassment to other people. It’s affected just about everything in my life. I’m not able to go back to work.”

- Sandra

Therapeutically

Changes in medications
Emotional stability

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Tips for talking about TD

If you are experiencing unintentional, uncontrollable movements, be honest with friends and family about how you feel and explain how they can support you. Share what you know about TD and try to answer their questions.
If a loved one has uncontrollable movements, have an open conversation with them about their movements. Sometimes it’s difficult for those with TD to recognize their symptoms or the impact those symptoms have on their everyday activities.^1,3

What are some questions you may have for your doctor about uncontrollable movements?

Answer this 1-question poll to see how your experience compares to others.

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Are my unintentional, uncontrollable movements signs of TD? What causes these uncontrollable movements? Is tardive dyskinesia treatable? Will managing TD require me to reduce, stop, or switch my mental health medications? Other None of the above See Results

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References: 1. Warikoo N, Schwartz T, Citrome L. Tardive dyskinesia. In: Schwartz TL, Megna J, Topel ME, eds. Antipsychotic drugs. Hauppauge, NY: Nova Science Publishers. 2013:235-258. 2. Waln O, Jankovic J. An Update on Tardive Dyskinesia: From Phenomenology to Treatment. Tremor Other Hyperkinet Mov. 2013;3:1-11. 3. Sharing the impact of tardive dyskinesia. National Alliance on Mental Illness website. http://notalone.nami.org/post/97568253959/sharing-the-impact-of-tardive-dyskinesia. Accessed May 7, 2020. 4. Solmi M, Pigato G, Kane JM, Correll CU. Treatment of tardive dyskinesia with VMAT-2 inhibitors: a systematic review and meta-analysis of randomized controlled trials. Drug Des Devel Ther. 2018;12:1215–1238.