Explore Tardive Dyskinesia Stories from TD Patients

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RAVEN—DIAGNOSED WITH TD

“The TD was so bad, I couldn't eat with a knife or fork. I couldn't feed myself.”

TASHA—DIAGNOSED WITH TD

“…when you get this, you can’t control the movements anymore, which is very hard socially to be out in public. It’s very embarrassing. And the more nervous and stressed you are, it makes it a million times worse.”

RAVEN’S BLOG

“Before TD, I led a
very active life...
However, as my TD symptoms progressed, that all stopped.”

TD Patient Raven sitting on park bench petting his dog.

RAVEN—DIAGNOSED WITH TD

"I didn’t realize what was happening and I’m like, well, I can’t stop it from moving."

PEGGY—DIAGNOSED WITH TD

“I would be a lot happier, and I would be more confident in myself. And possibly feel like I am whole again and I could do things independently again.”

TASHA—DIAGNOSED WITH TD

“But then after time as it got worse, then, I wouldn’t notice the facial movements. And I said I could actually feel ‘em because your face and muscles tense up in your neck and your face area. And that’s when I reached out to my girlfriend who was a neurologist and said ‘something’s going on – I don’t know what, but, you know, something is happening.’”

“I can feel better about myself because I don’t
feel as responsible for
not being able to control
my body.”

RAVEN—DIAGNOSED WITH TD

TD Patient Raven speaking about his experience with tardive dyskinesia.

RAVEN—DIAGNOSED WITH TD

“People would ask me if I was on drugs because my body was always moving.”

TASHA—DIAGNOSED WITH TD

“It started out just a twitch here and there, and then it just gradually got worse and worse, until the point where it was uncontrollable.”

“I have the head jerking,
the tongue going in and
out, my trunk is always shaking, so it affects the whole body.”

PEGGY—DIAGNOSED WITH TD

PEGGY—DIAGNOSED WITH TD

“I did normal activities. I drove, I danced, I did hobbies, and I did a lot of things on my own. But the Tardive Dyskinesia had taken a lot of that away. And it’s made me feel like a monster, and less of a person.”

“I was very independent. I could do my housework and laundry and everything;
drive, and I went places. It feels like I had been put in a prison and locked into a room. It feels like all the freedom that I had has been taken away.”

PEGGY—DIAGNOSED WITH TD

TD Patient Raven smiling and sitting on park bench petting his dog.

RAVEN—DIAGNOSED WITH TD

"I don't feel like a victim. And I do feel better about myself."

RAVEN’S BLOG

“Learning that
what I had been experiencing all those years had a name reassured me.”

“Tardive dyskinesia has had an impact on every aspect
of my life, from the trivial to the profound.”

Before TD, I led a very active life. I worked out five to six days a week, worked a full-time job, and enjoyed going out with friends a couple of times a week. However, as my TD symptoms progressed, that all stopped.

Personal relationships were the first casualty of TD for me. As the movements became more pronounced, I became increasingly paranoid, constantly wondering if people were staring at me. Well, now I know they were staring because, unbeknownst to me, my arms and legs were flailing about. It was impossible not to notice that I could not keep myself still.

I stopped going out with friends and eventually stopped seeing people socially almost entirely. The final straw occurred when one day, on my way to work I was reading the newspaper on the bus when another passenger pointed at me and said at the top of her lungs something to the effect of “he’s nasty, what is he doing with his hands.” I was mortified. Turns out I had been rubbing my thigh beneath the newspaper. As a result of this paranoia and humiliation, I isolated myself outside work. The gym was the next casualty for me. I am one of those freaks who actually enjoys working out so this was a major deal for me. One of the TD symptoms I experience is my right hand will spontaneously open and release whatever I’m carrying. Consequently, weightlifting became dangerous as both my doctor and I worried about the very real possibility that I would drop a weight on my head or chest if my hand released.

This fear became all too real one day at work.

“I was on a ladder placing items up in a loft when, because of
the TD, my hand just released. I fell eight feet chest first onto
a wooden stool. That was the first but not the last time I ended
up in the emergency room due to TD.”

Another time I was holding a glass when my hand released. The glass hit the bar and shattered, lacerating my hand in five places. I was, however, still able to work. It wasn’t until my hands began to shake so violently that could not feed myself with a knife and fork that I had to stop working and go on disability.

It has taken a while for me to get my life back. I have been managing TD for almost five years now and my symptoms have decreased dramatically. My hands no longer shake so I am able to work again. I can now feed myself with utensils (it’s the little things in life right 😊), and I am able to work out again. I’m even starting to reconnect with old friends.

Looking back, I began to experience the uncontrollable movements I would come to know as tardive dyskinesia in 2001.

“At first, the movements were so subtle I didn’t even
notice. As the disease progressed and the movements
became more pronounced, friends and acquaintances
would ask me if I was ‘OK.’ ”

Being unaware of the movements myself, I would wonder why they were asking. It took my mother confronting me, as only a mother can, for me to become consciously aware I was making the movements. The movements had progressed so slowly I wasn’t even aware they were occurring.

My mother was first to voice her concern to me about the uncontrollable movements. What my mother noticed that I failed to see, were hands that shook so fiercely I could not feed myself with a fork or spoon because the food would fall off. I could not wear button down shirts as my fingers couldn’t guide the button through the hole.

She insisted upon accompanying me to my next psychiatrist appointment and I am so glad she did. What was supposed to be a fifteen-minute, follow-up visit took over two and a half hours as my mother grilled the psychiatrist about what was happening to me. I had been seeing the same psychiatrist for fifteen years and she had never acknowledged or asked me about my movements. By the time I received my diagnosis, the movements were so severe that I had strangers asking me if I was taking illegal drugs.

Still, my psychiatrist said nothing about what could have caused the movements. Instead, she referred me to a neurologist.

Lucky for me, that neurologist happened to be participating in a clinical trial for a drug to treat tardive dyskinesia.

“He explained to me that all the shaky hands, head bobbing,
trunk twisting, tongue biting, etc., were symptoms of a rarely
diagnosed disorder called tardive dyskinesia.”

Learning that what I had been experiencing all those years had a name reassured me. It made me less afraid. I’m so grateful my mom was there to help me speak up about the movements.

learn more about a treatment for TARDIVE DYSKINESIA

References: 1. Tardive dyskinesia. National Alliance on Mental Illness. Accessed December 12, 2023. https://www.nami.org/About-Mental-Illness/Treatment/Mental-Health-Medications/Tardive-Dyskinesia 2. Warikoo N, Schwartz T, Citrome L. Tardive dyskinesia. In: Schwartz TL, Megna J, Topel ME, eds. Antipsychotic Drugs. Nova Science Publishers, Inc.; 2013:235-258. 3. Waln O, Jankovic J. An update on tardive dyskinesia: from phenomenology to treatment. Tremor Other Hyperkinet Mov (N Y). 2013;3:tre-03-161-4138-1. doi:10.7916/D88P5Z71 4. Derrow P. What is tardive dyskinesia? Symptoms, causes, diagnosis, treatment, and prevention. Everyday Health. Accessed December 13, 2023. https://www.everydayhealth.com/tardive-dyskinesia/

“It makes me feel
self-conscious
and judged.
It impacts my
social life.”

Are your involuntary
movements affecting you
physically and emotionally?
Sounds like TD.^1,2

Life with tardive dyskinesia (TD)

Explore people's experiences with TD

learn more about a treatment for TARDIVE DYSKINESIA

“It makes me feelself-consciousand judged.It impacts mysocial life.”

Are your involuntarymovements affecting youphysically and emotionally?Sounds like TD.1,2

Life with tardive dyskinesia (TD)

Explore people's experiences with TD

learn more about a treatment for TARDIVE DYSKINESIA

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“It makes me feel
self-conscious
and judged.
It impacts my
social life.”

Are your involuntary
movements affecting you
physically and emotionally?
Sounds like TD.^1,2