1 vs 8,765

This post was originally posted on my website and the infographic with all the dots is available for download and use at the bottom of the page via this link.

I see my neurologist twice a year, about half an hour every time. That’s one hour per year in healthcare for my Parkinson’s disease. During the same year I spend 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. Only during the one hour per year (the red circle in the image to the left) am I in direct contact with neurological specialty care and its clinical practise and guidelines.

And it’s also during this one hour that my condition is evaluated by my neurologist and my treatment is prescribed. But it’s during the 8,765 hours of selfcare (the blue circles in the image, and yes, there are 8,765 blue circles, I am that nerdy 🙂 ) that the I put my treatment into action. I take 6 prescription drugs, 6 times a day, in 5 different combinations, with 6 different time intervals. Because let’s face it, my doctor doesn’t even know if I take my medications or not.

It is also during my 8,765 hours of selfcare that I can observe the effects of my treatment. And what if I could register my observations in a systematic way and bring to my next neurologists’ visit?

Guess what? I already am!

I am not saying I want more time in healthcare. I really don’t think I need more time with my neurologist. However, I am saying that healthcare needs to acknowledge the work we patients do in selfcare and also start working to make use of our observations for their own knowledge.

Just imagine what we could achieve if we start working together – as equals with different but complementary areas of expertise!

 


Sara Riggare

I live in Stockholm, Sweden with hubby, 15 year old daughter and our two cats. I experienced the first symptoms of Parkinson’s (PD) in 1984, when I was 13 years old and now I combine my engineering skills with my patient experiences to help myself and others with chronic diseases. Currently, I am working to complete my doctoral education at Karolinska Institutet in the area of self-tracking for PD. I was an ambassador for the World Parkinson Congress (WPC) in 2013 and 2016 and am co-chairing the Patients Advocates Committee for WPC 2019. I am also an advisor to the conference Stanford Medicine X and a member of the British Medical Journal’s Patient Panel. Read more on my blog: www.riggare.se.

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