I was 32 when Ihad Parkinson’s disease diagnosed in June 2003, but I had known that somethingwas wrong for almost 18 years. I experienced the first symptoms in my teens,and a few years later was diagnosed as having generalised dystonia.

I researchedthis diagnosis for hours in the library in the suburb of Stockholm where I grewup. I read page after page of medical textbooks, trying to make sense of theways my body was failing me. Sometimes it felt as though my body simply ignoredmy intentions. For example, I was much slower than my classmates at buttoningmy shirt in the changing rooms. My fingers would be slow and rigid, and I feltawkward and sad.

I was empowerednot only by the knowledge I acquired, which helped me to better understand mysymptoms, but also by the process of sense-making itself. To read medicaltextbooks and peer reviewed articles restored a feeling of control amid all theuncertainty.

When I wasfinally given the correct diagnosis, I knew that searching for informationwould be key to managing my disease. The process was easier and more effectivebecause the internet had evolved immensely.

Now I take sixprescription drugs to manage my Parkinson’s disease, combined in threedifferent ways at six different times a day. When I need to change dose, I usemy smartphone to track finger function, allowing me to optimise the timings.These days my neurologist tells me that I know more about research into thedisease than he does.

I am definitelyan e-patient.

Sara Riggare, doctoral student in health informatics

Karolinska Institutet, Stockholm, Sweden

[email protected]