My name is Mats Nyberg, I am 56 years old and I live in a terraced house just outside Stockholm together with my wife. I have a background as a researcher in quantum chemistry, but since 2003 I have been teaching physics and math in high school.
In 2010 I started noticing a twist of my head to the right. I had no idea what it could be, but as it progressed I decided to go and ask my medical doctor about it. The response was that it is just a nervous tick, and something I had to try to stop thinking about and it would stop. That advice didn’t really work for me, the condition kept getting more and more serious. Googling my symptoms, I started suspecting that it might be dystonia. We spent Christmas in Trieste, Italy, where me and my wife decided to go and see a private neurologist, and she immediately recognized it as cervical dystonia and prescribed some oral drugs for it. Those drugs had no effect on my condition. Coming back to Sweden I was referred to a neurologist that confirmed the diagnosis and I also started getting injections with botulinum toxin. That was a great relief, I really needed it to function well in my work life which included classroom activities, meetings and regular trips to Tanzania with students.
After years with successful treatment with injections I suddenly felt no effect from the botulinum toxin. It turned out that I had developed immunity to botulinum toxin. This was around 2014, and I wasn’t able to work at all, my head was constantly twisted with huge pain when I tried to do anything. I also had difficulties falling asleep since my head twisted the whole time in bed. I was on sick leave from work and wasn’t able to drive or meet with friends. My neurologist suggested that I might have a DBS implant, and after a little more than a year I did get the implant at the Karolinska university hospital in Stockholm. Within weeks I had some positive effects from the implant, not at all as good as those from injections, but still good enough for me to go back to part time teaching, driving and maybe the most important effect was that when my head rested against a pillow I could sit or lie down without any twisting. I suddenly had no problem lying down and falling asleep.
Still today, the most positive effect I get from the DBS implant is total relaxation going to sleep. The DBS sometimes interferes with my daily activities, making my head less flexible when I try to turn it. I can, however, turn it off when I need extra flexibility.
Today I try to live my life to the fullest. I travel a lot, all over the world, especially to Italy since my wife is Italian and I also spend a lot of time at my country house in the archipelago. I go to the gym, do yoga, play golf, bike a lot, go for long walks and ski in the winter. I also play bridge regularly at quite an advanced level. Some activities are great for me, such as biking and skiing. Even teaching in the classroom works great for me. I actually stop thinking about my dystonia during these activities, I guess it is because my brain gets busy with the complicated tasks that they constitute. Other activities are difficult, especially walking and attending meetings. My head starts twisting a lot when I walk, which is annoying but I have decided I must do it anyway since strolling around in nature feels really important for my well-being, mentally as well as physically.
I am currently serving as the Chair of the Swedish Dystonia Association and recently got elected as a board member of Dystonia Europe, where I really hope to be able to contribute in some way.
