I have had my website up for a few years now and many people have asked to hear more about my story. So, I thought that I would write a bit more on this page for those who are interested. It is really a long novel and these few pages only touch the beginning of the whole story.

In the Fall of 1995 I went out for dinner with my father. The chicken that I ate at the restaurant that night contained a very large amount of a bacteria called camylobacter jejuni. This nasty bug proceeded to infect my entire digestive system and made me extremely ill. Eventually, after several trips to the university health center, I was admitted to a local hospital. I was told that I would only need to be there overnight to be re-hydrated. Unfortunately I ended up staying 8 days.

During that first few days at the hospital I was given a drug called Reglan (a gastrointestinal neuroleptic drug) to help stop my incessant vomiting. My body immediately reacted to the drug in a bad way, but I could not really describe what was happening in my delirium. I was shaking and I had a bizarre feeling of the “creepy crawlies” all over my body (which I now know was drug-induced akathesia). Eventually I had an acute dystonic reaction which included a severe arching of my back (opisthotonus) similar to tetany and deviation of my head and eyes (oculogyric crisis). It was extremely painful. The nurses and doctors did not recognize my symptoms were from the drug until I was in full dystonic posture. I tried to scream from the pain but the dystonia also affected my larynx enabling only a strange gutteral moan. It took nearly five hours of using IV Benadryl and Cogentin before the dystonia even calmed. The hospital staff had never encountered a dystonic reaction so severe and many resident doctors and others on the ward stopped by my room to marvel at the sight.

This was just the beginning of my life with dystonia. In the weeks that followed I returned to class only to find that the reaction was still hanging around. Strange movements began to possess my arms and legs. I could not sit still or take notes in class. Eventually my left foot began turning in and dragging as I walked. I was soon re-admitted to the hospital. The doctors proceeded to say that a dystonic reaction could not last this long and that I must therefore be a psychiatric case. Because of this misdiagnosis I was given Thorezine (another neuroleptic drug that can cause/worsen dystonia). The doctor continued to give me thorezine for my “psychiatric movement disorder” and of course my body eventually rebelled once again to the insult on my brain with another dystonic reaction. This time the reaction caused more writhing and flailing in addition to oculogyric crisis and severe respiratory dyskinesia causing problems with breathing (nurses noted that I was turning blue and should have been on a vent or at least on oxygen). The doctors said that there was no reason to take me to ICU or put me on a vent since I was a psych case. Since it looked similar to a seizure, except that I was conscious and moaning through much of it, the doctors said it could only be that I was “throwing a temper tantrum” by “faking a seizure”. I knew that what was happening was the same type of reaction I'd had to the Reglan. I tried to explain this, but it was quite difficult since I again was having laryngeal dystonia affecting my voice. They really did not care much about my opinion of my situation anyway. The nurses were very encouraging and supportive of me through much of this, but the doctors were actually quite abusive. They were physically abusive by shaking me and violently injecting things while holding me down, as well as verbally abusive by screaming things at me and being very accusatory and derogatory. There was a lot more to this as well, a very intense part of this story, but I will not go into any more details here. Mostly I am sad that I was treated so badly just because I had been labeled as a “psych” case. I want people to know that no one should be treated the way I was that week and that there are many people all over the U.S. and the world experiencing much more severe violations of human rights than the little that happened to me that week. Many psychiatric patients are abused, neglected and completely removed from any voice they might have in their care. I feel that as a survivor of abuse by the medical profession it is my duty to educate others about what is happening and become a voice for those whose voice has been taken. The psychiatric diagnosis is a quite common misdiagnosis for people with tardive dyskinesia and/or dystonia. Unfortunately the medical profession is often abusive to people with a psychiatric diagnosis. Please contact me if you are interested in this aspect of my story.

After I finally got out of the hospital I was forced to withdraw from the university. This was very hard for me and I had put it off as long as I could. It was so hard to make the phone call to the dean to drop out of school, but I had no choice. The dystonia and dyskinesia still writhed through my body constantly. It was getting extremely difficult to walk. I moved home to live with my parents and I was again admitted to another hospital. By the time of my third admission I could no longer walk without crutches. The doctors there remembered that I had had a strep infection that summer that was pretty bad. They concluded that I probably had Sydenham’s Chorea (SC). It is a disorder caused by Rheumatic Fever (strep) which infects the brain causing dyskinesia (chorea). Granted the docs had a good guess with this in that I did have chorea, but it was unfortunately the wrong diagnosis. I was so happy to have a diagnosis and that someone was finally recognizing that I wasn’t crazy. Unfortunately for me the treatment for SC is neuroleptic drugs. I was put on Haldol (another neuroleptic known to cause dystonia and tardive dyskinesia).

I was discharged to go home after extensive testing. After four days at home on Haldol, I had my third dystonic reaction. This one caused an extremely painful deviation of my jaw as well as twisting of my neck (torticollis) and another generalized dystonic reaction. My parents rushed me to the Emergency Room. My shirt was soaked with drool and blood (I had bitten my tongue several times). I could not talk again and the pain was unbearable. I also had respiratory dyskinesia making it hard to breathe. The doctors thought that my jaw was dislocated, but on closer examination it was just barely still in socket. They hooked me up to IV Benadryl and artane. The reaction seemed to settle faster than the other two reactions I’d had in the past. I was re-admitted to the hospital for observation and stayed for four days. Eventually I went home again this time with a collaboration of drugs…many to counteract the dystonic reactions from Haldol. I took Haldol, Artane, Ativan, Benadryl, Naproxen and Prednisone.

So that is the end of the beginning of the story. For the next several months I had several problems related to the medications and slowly got to the point that I wanted to go back to school. I told the doctor that I wanted to go back to school. He was not thrilled at the idea, but was willing to help wean me off the drugs so that my mind would function for classes. When I finally got off the meds I actually felt better, but my movement problems never fully went away.

I went back to school in January of 1996. I had a very difficult time and received some poor grades during that semester. By March, my left foot was dragging so badly that I could not walk to classes. I called home and the doctor put me back on medications. I started taking Thorezine (one of the mean ones) and Artane to counteract side effects. The meds helped enough that I was able to finish the semester. (This is an example of the “masking” effect caused by neuroleptics in patients with established tardive dyskinesia). However, I had several side effects from these drugs including hallucinations, tachycardia and memory loss. I went off the meds again in May and I seemed to be doing much better. I enrolled for summer classes to hopefully catch up, but by the middle of the summer I was starting to get the “creepy crawlies” (akathesia) again and my left leg was turning and dragging again. I dropped my classes but stayed at school working a part time job until the end of the summer. The Fall semester started before I knew it and my symptoms were slowly getting worse. By the second week of class I had quit my job and was unable to walk to class. I called my mother and told her that the chorea was back and I was pretty messed up. We made an appointment at the Mayo Clinic and by the time my Mom came to pick me up at school I could no longer walk.

At Mayo I went through a plethora of tests for everything under the sun. Some of the ones I was tested for include Lupus, Huntington’s Disease, Parkinson’s Disease, Multiple Sclerosis, several types of ataxia, Nieman Pick disease, Wilson’s disease and several metabolic disorders. I had MRIs, blood tests, biopsies and several other tests. I was there for two weeks. One doctor told my Mom that he thought I was going to die. He said, “We don’t know, she might have 2 days, 2 weeks or 2 months…”. Many of the doctors were very caring there, but others just treated me as the case of the day. Again it was the nurses who showed the most compassion.

I went home with a pile of negative tests and no answers. The only way I had to figure out what might be wrong with me was a list of disease possibilities on my summary record. With the one finger I had available to type with, in between severe spasms, I began searching the Internet for answers. Every day the problems were getting worse. My parents feared I was dying or might die from choking as I had severe respiratory involvement. At the end of my list of diseases I saw tardive dyskinesia which had never actually been mentioned to me, but was last on the list of possibilities. I had spent several days typing in different diseases and symptoms and had found nothing that matched what I was dealing with. When I typed in tardive dyskinesia (TD), I found the answer, I knew that this is what had happened to my body. I cried. There was no doubt in my mind that this is what it was. My mother and I sat in front of the computer crying in disbelief that no one had known (or cared to know) that this is what I had.

For the following year I went from one doctor to the next trying to educate them about tardive dyskinesia (and my form of it “generalized tardive dystonia”). I even went to some neurologists who continued to say I was crazy giving me a diagnosis of “conversion disorder” or “psychogenic dystonia”. I also went to a psychiatrist to prove to them that I was sane. The doctors at Mayo had already done about 24 hours of psychiatric testing on me and came up with nothing. Eventually I found a neurologist who began treating my TD/dystonia and believed that it was the drugs that caused my disorder.

I soon bought my own wheelchair and returned to school to finish my degree. I found it quite difficult to push my wheelchair at times because of the dystonia in my left arm. That is when I applied to Independence Dogs and eventually was matched to Kramer. He functions as my left arm and has been my best friend for 6 years.

In May of 1999 I graduated with my B.S. in Animal Science. Kramer and I then married my best friend from college (Greg) who had been by my side through the whole ordeal. We honeymooned in Canada and then moved to Indiana. We moved back to Illinois in January of 2001 and I finshed my M.S. in Kinesiology (motor control) in August of 2003. We recently moved back to Bloomington, Indiana and I am now working on my PhD in Neuroscience at Indiana University.

Generalized tardive dystonia has been with me for 11 years now. It is a part of my everyday life, but it hasn’t taken my life. I am a fighter and I continue educating others about TD and dystonia and searching for better treatments, diagnostics and ultimately a cure. I am an advocate for all people with disabilities and I think that our country has a long way to go in establishing equal civil rights for everyone.

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