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
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!
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?
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!”
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
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
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
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
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
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…… Continue reading “The Patient Perspective” from The Journal of Parkinson’s Disease 20th March 2014