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In English Self-tracking

“Run Parkie, run!”

The “internal feedback system” of people with Parkinson’s does not function properly. I have no idea what the neuroscientific explanation is but I think that our body awareness is seriously flawed. We simply don’t know where we have our arms and legs or how we use them, that is why we walk in a strange […]

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In English Self-tracking

Motivation to fight Parkinson’s

I have been trying to think of an appropriate symbol for Parkinson’s and finally I have found what I think is the perfect representation: a snail. People with Parkinson’s move slowly, as does the disease itself, but often we are persistent and get where we want in the end, very much like our little mollusc […]

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In English Self-tracking

The Fight Parkinson’s Club

On our way from the airport in Lisbon to the rehabilitation centre  Campus Neurológico Sénior (or CNS for short, pun intended, I’m sure) in Torres Vedras, our wonderful physical therapist, Josefa, says something about “the first rule of…”, and immediately the film “Fight club” springs to my mind. I blurt out “…don’t talk about Fight […]

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In English Self-tracking

Fighting to stay well

Parkinson’s is hard work. A friend of mine, on his way to becoming a neurologist, says to his patients: “Having Parkinson’s is a full time job”. I have never told him, but I have been thinking he exaggerates, but I was wrong. If you want to stay as well as you can, Parkinson’s is a […]

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In English Self-tracking

Chronic disease and self-tracking – part 1: heart rate

Having a chronic disease is lifelong learning, even if you don’t want to. Living with a progressive disease is a challenge on the best of days and if you add the twists and turns that an ordinary life comes with… Well, let’s just say it helps if you are solution-focussed and creative… Self-tracking is, in […]

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Presentations in English Self-tracking

Quantified Self Europe 2014

This week I am in Amsterdam for the third Quantified Self Europe conference. I am really  looking forward to seeing everybody again and be part of the amazing discussions that will happen. The program can be found here: http://quantifiedself.com/2014/05/2014-qs-europe-conference/ A video of my presentation: “How not to fall” can be found here:

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Articles in English Self-tracking

“The Patient Perspective” from The Journal of Parkinson’s Disease 20th March 2014

This is an article written by Jon Palfreman for The Journal of Parkinson’s disease, published on 20th March 2014. It is published here with the permission of the author. The original article can be found at: http://www.journalofparkinsonsdisease.com/JPD/The_Patient_Perspective.html. In October 1984, a thirteen-year-old girl called Sara sat in a small village hall in northern Sweden enjoying a […]

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In English Self-tracking

Travels with Parky

This is an article I wrote for “On The Move”, the magazine of Parkinson’s Movement on my experiences when travelling to the World Parkinson Congress in Montreal earlier this year. In the magazine, the article had to be slightly edited to fit the space available, but this is the “uncut” version 🙂 .   When […]

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Presentations in English Self-tracking Videos

Presentation at QSEU 2013

You can read about and watch the talk I gave at the conference Quantified Self Europe in Amsterdam in May 2013 below. http://quantifiedself.com/2013/06/caspar-addyman-and-sara-riggare-on-tracking-parkinsons/ 

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In English Self-tracking

Quantifying freezing-of-gait

These are my feet, they have been with me for 42 years soon and they mostly serve me well. However, recently I have noticed an increasing tendency to get freezing-of-gait, an annoying effect of my “flavor” of Parkinson’s disease. For some more information on what freezing-of-gait, watch this film: http://www.youtube.com/watch?v=aaY3gz5tJSk. Although the case in the film […]