My Story

I have an condition that no doctor wants to confirm, tardive dyskinesia and tardive dystonia. Fancy words for a drug induced movement disorder. I take these two psych drugs, abilify and remeron, which affect the basal ganglion of my brain. I’ve been taking these type of drugs for over 36 years and these drugs have caused me to have this condition called TD.My symptoms first started during the 1980’s when I was taking haldol. I would rock incessantly and my tongue would protrude. It wasn’t until sometime in the 1990’s my medication was switched from haldol to seroquel. The rocking subsided and my tongue stopped protruding.A combination of seroquel and geodon landed me in the ER where I was admitted to a cardiac unit. It was on this unit I first started to have audio hallucinations.

The Hallucinations:I heard voices on the tv talking to me, such vile sex trash it turned my face red. I asked the nurse to turn the tv off and she was puzzled and said, “the tv is off.” The phone talked to me, but when I looked at it, it was on the receiver.

The Conditon:The doctors were convinced I was faking not being able to move, urinate, or swallow. I woke up once and found my hospital gown had slipped down, exposing one breast. People passed by and stared. Finally a male nurse came in cursing and said, “Can’t everyone see she really can’t move,” and covered my exposed breast.

Diagnosis and Treatment:The physical therapist came to see me. I looked up at her as she asked the nurse, “What’s her diagnosis?” The nurse answered, “The doctors can’t find anything wrong.” The physical therapist immediately replied, “Psych Consult!” I was told by the physical therapist if I could walk from my bed to the far wall and back, I would be discharged home. We found that I walked better without a walker. I reached the far wall, was told to turn and I did. I felt myself falling and heard someone say, “Oh Shit.” I couldn’t see. I felt hands all over me. I felt myself being lifted off the floor and carried back to my bed where I was firmly tucked in. My sight gradually returned but no one would answer my pleas for an explanation. I never saw the physical therapist again.
At all times, the doctors’ bedside manner was brusque, bordering on rudeness. Once I woke up and found myself talking with the head nurse. I have no idea why we were talking. All I can remember was the head nurse telling me that she had witnessed what happened between me and a doctor. She had all her nurses pass by my room to witness and chart what they saw and heard. I was then reassured that in a court of law, the nurses’ notes took precedence over any doctor’s notes. I have absolutely no idea what she was talking about.

I remember hearing the ward chief talking with my parents, telling them how he resented being woken at all hours of the night because the staff called concerned about me. I was puzzled. What was the concern? Why was I on a cardiac unit? Why couldn’t I move? Why couldn’t I swallow? Why did I black out? Why was I being treated as less than human, with no courtesy or regard for my feelings? To this day I’m still asking these questions.

As I was being transferred to the psych unit a nurse yelled after me and the male nurse escort, “You’ll be sorry when you find her hanging from the ceiling. She belongs on a secured locked unit. People coming off these drugs need to be watched very closely. You’ll be sorry, wait and see.” I was reassured that on the psych unit I would get the treatment I needed for the psychiatrists and psych nurses know best how to treat people like me.