I have called myself a self-tracker since the first time I heard the word. The concept of using technology to collect data about myself and then analysing that data to better understand different aspects of myself and my surroundings has always resonated strongly with me, both as an engineer and as a researcher. My self-tracking…… Continue reading The Burden of Tracking
Category: In English
Most people would probably agree that being diagnosed with Parkinson’s disease (PD) at age 32 would be a hard blow. It was. I usually describe it as “it felt like I fell down into a black hole”. Stephen Hawking would probably have a lot to say about my complete disregard for the laws and theories that…… Continue reading Perspectives?
Going from researching patients to patients researchers
In September I will be attending one of my favourite conferences for the third time: Stanford Medicine X! It is the most patient-inclusive conference I have ever come across and always full of people generously sharing their stories relating to medicine and health. This year I will participate in a panel discussion titled “Going from…… Continue reading Going from researching patients to patients researchers
Lena increased her daily “feel-well-time” from three to ten hours
For the last year or so I’ve been working in a project funded by the Swedish government’s national strategy to treat and prevent chronic diseases. We call the project “Dagens patient” (“Patient daily” in English) and you can read about it here. “Dagens patient” is based on my work around self-monitoring my Parkinson’s and we…… Continue reading Lena increased her daily “feel-well-time” from three to ten hours
Tomorrow, 2nd June 2015, is my #Parkinsons1day!
Tomorrow on 2nd of June, I will be sharing my experiences with Parkinson’s with Gilles Frydman of Smart Patients and on Twitter so you can follow me if you like. I described this project in a post yesterday and I will start at 6 am my time, which is Central European Time, when I take my…… Continue reading Tomorrow, 2nd June 2015, is my #Parkinsons1day!
#Parkinsons1day is a project initiated by Roni Zeiger and Gilles Frydman of Smart Patients, an online community where patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience. The community started in cancer but is now also moving into other diseases…… Continue reading #Parkinsons1day
Parkinson’s never takes a day off
Parkinson’s is a neurodegenerative disease, meaning that it gets worse as time goes by and there is no cure. If you think about it, life itself shares those characteristics, but there is one important difference. For us having Parkinson’s, the downhill slope is much steeper than for people without a neurodegenerative disease for company. The…… Continue reading Parkinson’s never takes a day off
“Liberté, égalité, santé!”
Life in 18th century France was probably far from easy, although less difficult for some. The aristocracy were living relatively comfortable lives, where the very small minority were enjoying privileges that the large masses could only dream of. In fact, they couldn’t even dream there was such privileges. And we all remember the allegedly immortal…… Continue reading “Liberté, égalité, santé!”
Changing the image of Parkinson’s disease – one blog at a time
The 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…… Continue reading Changing the image of Parkinson’s disease – one blog at a time
At Quantified Self, I forget I have Parkinson’s
If 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…… Continue reading At Quantified Self, I forget I have Parkinson’s