Having Parkinson's since I was 13 has made me an expert in self-care

When I was 13 years old, I experienced the first symptoms of what almost 20 years later would be diagnosed as Parkinson’s disease. Getting Parkinson’s in your teens is pretty unusual, if not rare. Nevertheless, I am happy that I wasn’t diagnosed with an “old person’s disease” in my teens. I am convinced that if I had known when I was 16 that the problems I experienced with movement, gait and balance were due to Parkinson’s, I would not have gone to university, got my driver’s licence or dared to start a family with the man I met at university.

In Sweden, as in the UK, Parkinson’s is mainly managed with medication prescribed by a neurologist, preferably combined with physical activity. But most of the care in chronic diseases is not delivered in healthcare. I visit my neurologist two times a year, for about 30 minutes. The rest of the year’s 8,765 hours, I spend in self-care, taking care of myself the best way I can. During the one hour per year with my neurologist, he assesses my symptoms, answers my questions and prescribes the medication I take six times a day, in five different combinations. But frankly, he doesn’t know if I take my medications or not.

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This is why self-care is so important. I am the only person with the whole picture. To me, self-care is everything I do to stay as healthy as possible with a disease that is a difficult life companion. It entails everything from making sure I take my medication in the optimal way, to eating healthily, getting enough sleep, to making sure I stay physically active. I also make an effort to learn as much as I can about my condition; my neurologist says that I know more about Parkinson’s research than he does. I don’t find that odd, since he needs to try to stay on top of research in probably hundreds of neurological diseases, whereas I focus on just one.

I have never been one for much exercise and I didn’t enjoy sports growing up, probably because it was really hard work for me getting my body to move. Now, however, I know how important physical activity is for me to stay well and I use an activity tracker to measure how many steps I take every day, how much sleep I get and what quality it is. This makes me feel more in control of my Parkinson’s, because I know more about my condition and better understand why I am feeling really “Parky” after a night of bad sleep. It also enables me to see that the exercise I do really does have a positive effect.

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My strongest weapon against Parkinson’s is self observation. Sometimes I use technology and sometimes just a pen and paper. I use a finger tapping app to evaluate how the effects of my medication varies over the day and as a result have been able to optimise my medication regime. My neurologist welcomes discussions based on data I bring to appointments. We both agree that it would be ideal if the data I collected could be pulled into my healthcare record, but Sweden is not quite ready for that yet.

Besides being a patient, I am also a doctoral student in health informatics at Karolinska Institute in Stockholm, where I use my self-monitoring experience as the basis of my research. I am working closely with fellow Parkinson’s patients to develop and research tools that can improve our condition. I often present my work to different audiences: other researchers, fellow patients, healthcare professionals or policy makers. And almost every time, someone says: “But Sara, you are not a typical patient! You have to think about the old, the less engaged and the non-techies!”. To some degree, this is a generational issue, since older people tend to see physicians as more of an authority. But it is a myth that older people are reluctant to use new technology.

I am also active in patient advocacy circles internationally. This movement is growing stronger and consists of active, engaged patients, often with serious health challenges, who believe strongly in autonomy. We are convinced that the person with the biggest interest in their health, as well as the opportunity to do something about it, is oneself. And we want to work together with the healthcare system to achieve the best health we possibly can. After all, my health is my responsibility.

Sara Riggare will be speaking at the Nuffield Trust health policy summit on 26 and 27 February.

In the illustration below, the red circle signifies the hour in which I am in direct contact with neurological speciality care. The blue dots are the 8,765 hours in selfcare, applying my knowledge and experience together with what I get from my neurologist to manage a difficult condition as best I can.