Changing the image of Parkinson’s disease – one blog at a time

Screenshot 2014-11-05 20.40.14The general image of Parkinson’s disease is probably an old man with hands that are shaking, walking slowly and shuffling. In fact, that was my image of Parkinson’s before I was diagnosed myself. And we all know that those kind of images are very difficult to change… or are they?

A friend did an image search on Google for “Parkinsons sjukdom” (the Swedish name for our common enemy) and was surprised in a good way. And since surprises rarely are positive in chronic diseases, I thought I’d share the reason.

In Swedish, the first hit on Google image search is a pic from this blog! I guess that is one of the advantages of living in a small country: it is probably easier to have an impact.

I am very proud to be contributing to changing the image of Parkinson’s
– one blog at a time!

At Quantified Self, I forget I have Parkinson’s

images-4If I could only attend one conference a year, I know exactly which one I would choose: Quantified Self Europe. I have a very special relationship with the Quantified Self Europe conference in Amsterdam. In fact, I actually wrote my first two posts on this blog during the first QS Europe conference in November 2011 (read them here and here).

I have always felt so welcome and comfortable in the QS community, both at all the 3 QS conferences I’ve attended in Amsterdam and the Bay Area meetup I attended in September 2013. I remember watching Caspar Addyman’s ignite talk in 2011 and first regretting that I was sitting in the middle of a row and therefore wouldn’t be able to leave without drawing attention to me… but then I thought again… and I realised that what Caspar was talking about could actually be used for helping people with Parkinson’s. At the next QS Europe conference,  we gave a joint talk about that.

When I came home from the third QS Europe conference, I tried to explain to my husband what is so special about QS. I thought for a while and then realised:

At Quantified Self, I forget I have Parkinson’s.

Because at QS, no-one evaluates or assesses you, no-one judges, no-one looks at you and wonders what Hoehn & Yahr stage you are or what your UPDRS score is. At QS everybody measures something about themselves but they also respect your efforts to improve your life and your health without judgement. That is a very empowering feeling!

I am looking forward to attending my first QS Global conference in San Francisco 13-15 March 18-20 June 2015 (see info here) and I hope I won’t be the only parkie there.

Let’s meet in SF in June and share our best ideas to forget we have Parkinson’s!