In september 2013 I wrote a blog in Swedish fuelled by my frustration over the current situation regarding patient participation. I gave it the title “Enough is enough” (although in Swedish obviously). The blog seemed to resonate with a lot of people so I followed up with a blog with my suggestion as to a…… Continue reading My take on patient participation
Category: In English
Goal setting in the time of neurodegeneration
The end of another year is approaching – always a good time for reflections, evaluations and decisions… or…? I have never made any New Year’s resolutions and I have only recently started setting goals for myself. I remember a discussion I had with my younger brother on a summer’s night probably around 20 years ago.…… Continue reading Goal setting in the time of neurodegeneration
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
Bruised knees and bruised ego…
I have a new friend. She can be seen on the photo here and I picked her up in a shop the other day. A few days earlier I had no idea that I would feel the need to pick her up, but there you go, that’s life I guess. On Monday I went to…… Continue reading Bruised knees and bruised ego…
What is the currency in health?
The question of value is an intriguing one. What do we value? Are people judged based on their abilities: the man who were strongest were made (or made himself) the leader of the tribe? Or is a man’s value to a larger extent based on his possessions: the man with the largest number of belongings…… Continue reading What is the currency in health?
Patient engagement?????
One of my favorite films of all times is called “The Princess Bride”, a sort of “Errol-Flynn-goes-Monty-Python” experience and if you haven’t seen it, I strongly recommend you doing so. One of the film’s villains frequently says “Inconceivable!” and finally his twice-as-large and half-as-smart sidekick interjects: “You use that expression a lot. I don’t think…… Continue reading Patient engagement?????
Tokenism or talent?
Being an engaged and knowledgeable patient has a lot of benefits. On a personal level, knowing as much as I possibly can about my condition, about symptoms, medications, side effects, treatments, research and more, gives me more control of the situation, increases my possibilities to keep the progression of the disease at bay or at least…… Continue reading Tokenism or talent?
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
Health IT and security issues
For someone who has actually studied health informatics, I don’t blog as much about health IT as I probably should… Well, it’s never too late to change they say… A friend pointed me in the direction of an excellent blog post by e-patient Dave, a patient advocate I truly respect and admire for his ceaseless…… Continue reading Health IT and security issues
Perception part 2
Perception is a strange thing. After my diagnosis of generalized dystonia on the 6th of November 1989, I tried as best I could to not be different to anyone else, to not acknowledge the disease that the neurologist had told me that I had. This proved quite a challenge, since I moved slowly at times, and…… Continue reading Perception part 2