After my diagnosis of generalized dystonia on the 6th of November 1989, I tried as best I could to not be different to anyone else, to not acknowledge the disease that the neurologist had told me that I had. This proved quite a challenge, since I moved slowly at times, and also had trouble walking more than a few hundred meters without starting to lean more and more forward, almost falling over (festinating gait). All the same, I was enjoying my studies in chemical engineering at the Royal Institute of Technology in Stockholm, making new friends and eventually moved in with my new boyfriend.
Time passed and I changed neurologists (I have noticed that, given a choice, people rarely stay with the neurologist that diagnosed them, I think it probably is part of a coping strategy). Around 1991 or -92, the new neuro gave me a medication that gave me some relief from the trouble my body presented me with. In time I graduated with a master in chemical engineering and I started working.
In the spring of 1999, my neurologist told me that he wanted my to try a new medication. It was called levodopa and was mostly used for Parkinson’s disease. He had read about a kind of dystonia that had a positive response to this medication, called dopa-responsive dystonia and he wanted to see if that was what I had.
I took my first dose of levodopa in April of 1999 and it was the beginning of a new life to me! For the first time for as long as I could remember, my body actually responded to what I asked of it! I could move almost effortless and the world was a brighter place. I felt strong, in control and for the first time in my life, having a child started to seem a possibility.
On the 30th of January 2003, our beautiful daughter Frida was born. One of her father’s colleagues said: “She looks just like her father, but she is still pretty”. I was just going to turn 32 and the focus of my life had changed. I was very happy.
In May of 2003, I went to see a different neurologist. I was hoping he could tell me about what kind of research was being done in the field of dopa-responsive dystonia. He didn’t. Instead, he told me: “But you don’t have dopa-responsive dystonia, you have Parkinson’s disease”.
Parkinson’s disease… Here I was, 32 years old and he tells me that I have an “old person’s disease”… Perception is a strange thing. Hearing him telling me I had Parkinson’s disease changed my life. Having dopa-responsive dystonia was a burden, but the medication worked well and I had read that dopa-responsive dystonia didn’t necessarily progress, it could even go into remission. Parkinson’s disease, however, is a neurodegenerative incurable disease…
Nothing had really changed: my symptoms were exactly the same from before he told me that I have Parkinson’s disease. At the same time, everything had changed, my perception of my situation had changed. I saw nothing but suffering and despair in my future… I felt like inside a black hole and didn’t think I would ever smile again…
Luckily, having a baby that needs you is a good thing in such a situation. Her needing me made me look outside myself and brought me back into the world. In time I learnt that my type of Parkinson’s disease was of a relatively mild form with a reasonably slow progression. I was going to be able to enjoy many good years more.
On the 9th of June 2007, we celebrated our love and were married on the warmest day of that summer. Life is wonderful!