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
Category: 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…… 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
“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…… Continue reading “The Patient Perspective” from The Journal of Parkinson’s Disease 20th March 2014
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…… Continue reading Travels with Parky
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/ https://vimeo.com/68600543
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…… Continue reading Quantifying freezing-of-gait
Method description
To evaluate the effects of my medications, I use an app on my iPhone. I don’t have the tremor that most people (including myself) associate with Parkinson’s, but instead I have bradykinesia (slowness of movement) and rigidity with a bit of balance and gait problems, just to make it more interesting. I did know…… Continue reading Method description
Very preliminary analysis after two days on new dose
Thank you Zalamanda and Marten, for your comments on my previous post. Of course, I agree with both of you, two days is far too short a time to expect any kind of significant results. Nevertheless, I did observe some potentially interesting findings in these two days. The first graph shows the measurements i did on my very…… Continue reading Very preliminary analysis after two days on new dose