Awareness Works: My Mission to Help Educate Medical Students on Dystonia and DBS
By Kimberly Kell
Kimberly Kell and Jason Dunn were among a group of individuals from
the dystonia community who met with medical students at Wayne State
University to share their experience with the disorder and treatments.
I will start my story when my symptoms did... As a young person, being so cool -- thinking I was anyway -- I was using methamphetamines and on July 4th weekend, I took some that was laced with PCP. Because PCP is a hallucinogen, the leprechaun from the Lucky Charm's breakfast cereal followed me around for about two weeks. And honestly before this weekend I had been doing street drugs since I was 12, so of course I was experiencing mood swings. I had been seeing a psychiatrist for these mood swings and to "talk" about what was going on in my life. Well, as I was not ready to "talk" about the abuse that I had gone through and was still going through. The appointments were just a time to get yet another prescription. I also was not ready to tell anyone that I was smoking marijuana on a daily basis to cope, or so I thought it was helping me cope. I was placed in rehab to come down from the meth. Haldol (haloperidol) is a common drug hospitals give to bring people down, and now we know it can trigger dystonia. Within a week I started having symptoms of tardive dyskinesia (TD). As these symptoms begun to worsen with each day, the doctor ordered Cogentin (benztropine mesylate) for me. The combination escalated the dyskinesia, and my TD became severe. The drugs also induced psychotic behavior in me, so I was prescribed a new cocktail of several different psychiatric medications: drugs to stabilize my mood, anti-depressants (yes, multiples at the same time), and more anti-psychotics (also plural). At one point my pill count for my daily doses was 17 prescribed medications, and this did not include a gamut of supplements and vitamins.
Also, at this time, I was in a toxic relationship and was just trying to survive. I literally felt like I was going crazy! In 2005, after 12 years, that relationship had come to an end. When the relationship ended, I asked another psychiatrist to re-evaluate me, so he did and I was given a new diagnosis. I have post traumatic stress disorder (PTSD) from years of mental, emotional, physical, and sexual abuse. I guess I was trying to "hide" from all that by using drugs. It didn't work. All those memories were and are still here. Sadly this led to functional dystonia also. This diagnosis had been made in 1997/98, but I was in the toxic relationship at the time so it was a moot point to try and treat me when I was faced daily with a major source of the problem. After many treatments for my tardive dyskinesia and still taking the psychiatric meds, my tardive dyskinesia turned into tardive dystonia. I had become so depressed from everything, that I was suicidal by this point in my life. My partner at that time and I, after being together for eight years, had decided to have a child. As our beautiful daughter was born in June 2001, she became the reason for me to continue to live my life! As she crawled, so did I. As she drooled on herself, so did I. Then she began to walk, and I began to lose my ability to. I became afraid to hold her, because I was dropping everything, and I was afraid that I would drop her.
I got in touch with a friend that means the world to me to this day -- call her my Sensei and I am her Grasshopper, her student. She was also diagnosed with tardive dystonia. She took me to the International Dystonia Symposium hosted by the DMRF in Miami in 2002. There I got to meet people with many different forms of dystonia and see success from different treatments. When I returned from the symposium she introduced me to the medical team who performed her deep brain stimulation surgery. They ran me through a gamut of tests and decided that I was a candidate for DBS! It was a gamble, but at that point I didn't have anything to lose. I no longer could take care of myself, I had to have a nurse with me daily while my partner was at work. I couldn't watch my own daughter, due to me falling asleep frequently from all the medications that I was on. I said yes to a clinical trial for DBS for dystonia. I was one of my doctor's first 100 DBS patients for dystonia (I called myself a lab rat, he preferred the words "medical pioneer"). Ironically, I didn't show much improvement until my relationship ended and I was taken off all the medications. In 2005, I blossomed. Everything changed! I could take care of myself, and my daughter. That was an amazing feeling, to be awake and free! The medical team was all smiles. Not only did the symptoms of my tardive dystonia begin to improve, but the functional dystonia symptoms also improved. I was finally seeing a great improvement in me, and I was learning that DBS was being used more extensively to treat tardive dystonia.
In 2006, I met Anna, who would become my wife, and had moved from Northern California to Windsor, Ontario, Canada. I receive disability benefits for my dystonia still -- I am disabled but not broken. My movement disorder specialist is an Assistant Professor at Wayne State University in Detroit, Michigan and one day he asked if I would share my story at their "clinic day." Clinic day is a day of hands-on trials for second year medical students. My doctor asked me to educate the students about tardive dystonia and deep brain stimulation. I agreed and participated for the first time in 2007. I had students cry and sit in wonder. Some looked bored (they obviously are not going into neurology!). I fed off the ones that seemed interested in learning from an actual human being with a disorder they had only heard about in a lecture.
The next year, I participated again and brought friends with various forms of dystonia. The now third-year students from the previous clinic day had been talking up our next visit to the underclassmen, so there was more interest in what we were talking about. Each year I brought others with dystonia with me to clinic day. In 2010 I was having trouble with my dystonia so much that I was an in-patient, so my dear friends went without me. I had hit my head, just right, and damaged the wire to my left brain lead that it had to be replaced. Three medical residents were observing the operation and recognized me as the same laughing, joking, informative woman they saw two years past in their clinic day. They were in shock to see me laying on the operating table and to witness the procedure. The next day, as I woke up in the ICU, one of those residents came in to see me. Actually, she came to tell me that they remembered me. They remembered me? Little old me? Wow! I started to cry. The resident asked if I was in pain. I said, "No, it's because I now KNOW that all this awareness work we do, by going and talking to those who will listen, actually WORKS!" I still tear up just thinking of that day. The only clinic days I have missed were the time I was in-patient and the "Snowmaggedon" blizzard in 2011. The University had to cancel clinic day that time. This year I brought several friends with me from Windsor, Ontario and Michigan and Illinois. My good friend Jason Dunn came with me this time, and he wants to go back next year too.
I am not a hero, or any better than anyone else. I have dystonia... but I refuse to let dystonia have me!
There is something powerful about being to inspire a medical student, and to possibly influence them to choose a career in neurology and movement disorders. Maybe one of the students I reach just might be the one who finds our cure!