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

PD Bootcamp video

My week at the neurorehabilitation centre CNS in Portugal was fantastic and I can’t thank the physiotherapist Josefa and her colleagues enough for sharing their skills and encouragement. I also want to thank Jon for literally pushing me to accomplish more than I thought I could (see video below or link to video here at 1:25) and…… Continue reading PD Bootcamp video

Victory is mine!

On our 6th day at the centre for neurorehabilitation in Portugal, CNS, it was time for evaluation and reflection. How much can you actually achieve in just 5 days of training? We were about to find out… Josefa, the Portuguese physiotherapist who loves to complicate things (but only if it’s useful), put us on the…… Continue reading Victory is mine!

How to make it stick?

Day 5

These last five days at the centre for neurorehabilitation CNS in Portugal have been eye-opening and extremely hard work, I have learnt so much and had so much fun. You can read about the previous days here, here, and here. There has been Nordic walking gait training, balance exercises, home training program, walking and even…… Continue reading How to make it stick?

“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…… Continue reading “Run Parkie, run!”

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…… Continue reading Motivation to fight Parkinson’s

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…… Continue reading The Fight Parkinson’s Club

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…… Continue reading Fighting to stay well

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

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: https://vimeo.com/101714345

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