Jamie McDermott – Know Yourself
In September of 2014 I drove from Atlanta to Charleston not sure of what to expect at the annual symposium. By the time I had left I had met many amazing people and heard some mind boggling stories of what people had gone through. What I have written here is a snapshot of what my life has been like with dystonia. There have been so many twists and turns and ups and downs, but I know each of us share common experiences.
Around 1996 or 1997 I met Howard Thiel for the first time. I had just been diagnosed with dystonia a year or so earlier and I was struggling. At times I was angry, confused and not pleasant to be around. I was a sophomore in high school and the coping mechanisms I would learn over the years were not there yet. My dad had done some research and found Howard just a few hours away. This was a long time ago so I don’t remember much of the earlier meetings with Howard, but one thing that stuck with me was his positivity. I didn’t always keep it in mind, especially in the early years, but as time goes by I have come to realize how important it is to stay positive no matter the situation and especially with one like dystonia.
My challenges started from birth. I was born with my umbilical cord wrapped around my neck and it was cutting off air to my brain. The complications from my birth were a severe to profound hearing loss and mild cerebral palsy. The cerebral palsy has never really impacted me other than I love to play sports and I am not as good of an athlete as I would like to be. At a young age, there were other challenges along the way including the loss of a brother and half-sister. I have one brother and one sister that are very close in age and together we went through two divorces. I didn’t realize it at the time but these events are traumatic for a young person to fight through especially one with a hearing impairment, issues in school, and issues at home.
What caused my dystonia? Simply put, I don’t know. There seems to be two avenues of thought that I have heard mentioned again and again; trauma or genetics. Aside from what occurred during my birth, which I don’t know if it could be defined as a traumatic incident, I did not have any major accidents, injuries, or incidents before the onset of my dystonia. The divorces were tough and there were other tough times, but looking back I wouldn’t classify any of them as traumatic but they could have been. It could be genetics and all I can say about this is that I am the first in my family, whom I know of, that has dystonia. I am of European descent and had a doctor tell me that it is more prevalent in this class of people but I don’t know if that’s true. In the end though, I cannot state why I have dystonia.
High school was tough, but high school is tough for almost everyone, regardless if they have dystonia or not. The dystonia came on within a week or two during the school year. Little by little each day I had more and more difficulty holding my head up. At some point during my sophomore year I was relying on tricks to hold my head up. I was not a popular kid to begin with and the dystonia didn’t help the cause. In hindsight, my hearing impairment was a blessing in disguise, because I didn’t hear some of the things that were said. I also believe that one characteristic that I have that is extremely helpful in dealing with dystonia is a short memory. Today, I definitely have it, but even back in high school I had it. Writing this now and looking back on high school I have no idea how I persevered through high school, but a short memory and a strong family were two important things.
College! Going into college at Northern Illinois University my dystonia hadn’t reached its worst point yet; that wouldn’t happen until graduate school. In fact, these were the best years (as far as my spasms, not my mindset), when the botox was really effective. I started botox my junior and senior years in high school, with Dr. Tomas Mattio (Neenah, WI). Also, I went down to see Abigail Brown during college and that was very helpful. If my memory is correct Abby had said her symptoms subsided somewhat as she, “danced her way through college”. Now I’m not much of a dancer but I think I know what Abby was referencing. I was constantly on the move going to class, going to the library, being involved in deaf awareness and having a really good time. It was a 180 degree shift from high school. Now I wanted to go out and wanted to make friends but it was still a struggle. I had many tricks and mechanisms I used to help my neck relax. When my neck didn’t want to loosen up I would have to hold my head up walking to class or hold it up to see a lecture. I would zip my coat all the way up in the cold, not just to keep warm, but the coat collar around my neck would make the spasms subside. My dystonia was there and greatly affected my confidence but the botox held up pretty well. I saw Dr. Cynthia Comella (Rush University in Chicago, IL) for botox treatments in college.
After college I felt like I had to get out of the mid-west. Wisconsin and Illinois had been my home for long enough and the endless grey winters were no fun anymore. My parents had gotten me outdoors since I was a kid. We had taken a trip to Colorado when I was 12 and I fell in love with the mountains. I decided to move to Breckenridge for a year or so and work on the mountain during the ski season and the golf course during the summer. Again, the consistent physical activity really helped my dystonia but I could tell the botox was not effective anymore. I was snowboarding, golfing, trail-running, hiking, and lifting frequently. When I left Breckenridge in 2006 it had been about 9 to 10 years since I started botox.
In 2006 I headed back to Northern Illinois for two years of graduate school. The botox was ineffective and myobloc helped me very little, if at all, during this time. These were two very challenging years. Graduate school required me to type so many papers and give so many presentations. I would be in unbelievable pain after typing for a few hours. Even typing a few lines was challenging. Thankfully, I knew my professors from college and, while they gave me no breaks, it helped that they understood what I was facing. During this time, I couldn’t see that there would be a light at the end of the tunnel. I had thought that since the botox was ineffective and my regime from Abby wasn’t helping (although I wasn’t fully committed) that I was screwed, quite honestly. Being in chronic pain and suffering every day, suicide frequently found a way to squeeze into my thoughts, but why wouldn’t it? There was no way I was going to go like that though; I had fought so hard just to get here. Again, like high school, I had no idea how I persevered, but by now I was starting to realize that facing dystonia isn’t for the weak. I’m not going to go into religion here, because it is very polarizing and there are many different views, but 1 Corinthians 10:13 is one that I try to keep in mind. There is nothing that I have that God would give me if he knew I couldn’t handle it. It doesn’t always feel that way.
I moved to Los Angles in 2008 to complete my internship for graduate school in 2008. Why would I move across the country with dystonia to a place where I knew absolutely nobody? And least of all to a city where it is easy to get lost in the shuffle? Again, I needed that change of scenery and I had two things going for me. One, if I didn’t like it, it would be over in three months, and, two, I figured I would never know if I never tried it. It turned out to be an incredible experience. I met one of my best friends in life; I found that I really like the SoCal lifestyle and work was really fun. We explored the mountains around Mammoth, took an incredible backpacking trip in Kings Canyon wilderness and saw so many stars in the desert that it was unbelievable. By the end I didn’t want to leave but I didn’t have a job and California is way too expensive for a broke guy fresh out of school. My dystonia during this time loosened up and I don’t exactly know why. Like starting college it was a new experience and I was very active but I hadn’t had an effective treatment in a few years.
So it was back across the country in January of 2009, where I’m at today, in Atlanta. I’m thinking I need to move soon because I’m getting restless! After finishing my internship in LA, I didn’t have a job, so my brother-in-law offered me an internship with Coca-Cola. It was a paying internship and an intriguing one so I couldn’t say no. During this time I started volunteering my time at the Emory University Athletics Department and I also started researching more treatment options. My sister was a medical student at Emory at the time and was very helpful. A job opened up at Emory Athletics and I took it and I started seeing the neurologists at Emory. I should mention that I have taken klonopin for years and it helps take the edge off my pulling but in no way takes it away. My dystonia during this time was very present, but, at this point, I had become so used to it and was able to manage the pain. However, I was getting to the point where I needed to make a change and be proactive about my treatment. Dr. Stewart Factor and Dr. Colleen Peach (Emory University in Atlanta, GA) re-tried botox and myobloc, the only treatments I had ever received up to this point. The botox was mildly effective for a short time and myobloc was not again. Two options for treatment were presented to me at the time, Deep Brain Stimulation (DBS) and selective denervation.
After thoroughly contemplating each treatment, I decided on DBS. There were many factors that led to my decision and I have never met a doctor who does selective denervation so I cannot say one is more effective, or better, than the other. I am happy with my decision though. Abigail Collins advice on selective denervation did influence my decision as I respect her input on anything related to dystonia. In December, 2010, I had the surgery done. There may be quite a bit of interest on this but I’m going to keep it short and feel free to e-mail me with questions. During the surgery I had a stroke but it was random and not likely to happen but it did. I have recovered well though. Basically, what happened since my surgery is that my dystonia has subsided except during certain times. The main time my dystonia comes back is when I talk. My neck won’t spasm at all until I speak and then it becomes difficult. Other times include when I’m tired, stressed out or in new situations. Overall, the pain level has gotten much better. The past four years I have had many adjustments and the goal is to figure out how to get the dystonia to go away completely. We’re not there yet but I’m confident and happy with the progress that I’ve made.
In September, I was in Charleston for the annual dystonia conference. It was a great event and I met many great people. In meeting these people, I realized we all have different challenges, but they’re generally the same. For many, the pain and the discomfort force them to stop working. For me, I can’t imagine not working. I can’t imagine what I would do with the time. That being said, some days are hard and exhausting. The conference was generally attended by an older population than I and many had spouses that showed incredible support. Being young, one of my biggest challenges is finding a woman who can see past the dystonia and hearing impairment and be there to support me. She’s out there somewhere or so they tell me. If anyone has any good advice on dating with dystonia please be sure to let me know! I think on some level, at some point, all of us suffer from embarrassment. Honestly, I don’t get embarrassed anymore but it is part of the evolutionary process you experience having this challenge. I used to care what everyone thought about my dystonia and what’s going on but I don’t anymore. My doctors and family are the only people I take seriously.
Through my life I have found some consistencies that really help me deal with the dystonia and you may be able to tell from my story. One, I need some sort of physical activity. The days when I do nothing, which are few and far in between, I feel terrible. Physical activity is so important and very individualized. Many doctors are very cautious about lifting and running. I have decided to take on Olympic lifting (squats, deadlifts, etc…) because I love it and if I do it consistently I feel a good, relaxing tiredness at the end of workouts. Running wasn’t recommended, but I have found that lower mileage really helps relax me as well. I’m not encouraging you to follow my routine but rather to find a physical activity that you can do, that wears you out a little and, also, that you enjoy.
Secondly, I really watch what I eat and drink. I stay away from processed sugars (candy, soda, sweets) and generally try to eat healthy. The limit on sugars helps my spasms to cede somewhat. I do have my weaknesses such as a beer or ice cream before I go to sleep. I know now what food and drinks are going to affect my dystonia so everything is done in moderation or not at all. Also, I figure the healthier my body is every day, the more reserves I am going to have to get through each day.
The third thing I have to consistently do is put myself in uncomfortable situations. That includes things both big and small. The California and Colorado experiences were big life experiences that I would have never gained had I not just picked up and moved. But this also includes small everyday things. There are days when I don’t want to do yoga or lift because the rooms are sided with mirrors and there are more than a few people which is uncomfortable. Dates are the most uncomfortable thing I can possibly put myself through, but I know I have to do them unless I want to end up alone. With dystonia, I feel like I fail at things far more than the average person. Maybe that’s true, but, if I quit, then I’ve failed for good. 99% of the time, I don’t regret anything I force myself to do.
Hey, we only get one shot at this life.
Feel free to contact me anytime with questions, suggestions or anything else,
I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand