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.
Compassionate care – a superpower or
just part of the job?
Maria Davison
Read more
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.
Why can’t patients receive blood results
via text or use Skype for appointments?
Michael Seres
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.
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