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
Category: In English
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
Perception part 1
When a person is diagnosed with a serious disease, something happens. Maybe not instantly, but most often the words “You have X”, where “X” can range from diabetes over cancer to ALS, triggers a reaction leading to a reevaluation of your life as you knew it. I saw a neurologist for the first time in…… Continue reading Perception part 1
Healthcare vs Selfcare
I am a doctoral student at a medical university, but I am also a patient. What does the concept “patient” really mean? When is a person a “patient” and when is he/she something else? The word “patient” is derived from the Latin word “patiens” and the original meaning is “one who suffers”. In the current version,…… Continue reading Healthcare vs Selfcare
Free on-line consultation with a Parkinson’s specialist
A few weeks ago, I was introduced to Ray Dorsey (photo) via an email. Ray is an MD and associate Professor of Neurology and the director of Movement Disorders Division and Neurology Telemedicine at Johns Hopkins Medicine in Baltimore and he is involved with a very interesting project. He is offering free one-time consultations for…… Continue reading Free on-line consultation with a Parkinson’s specialist
My mission is NOT to improve healthcare…
My mission is not to improve healthcare… no, it’s not a typo… keep reading… And now that I have your attention, I will start over: My mission is not to improve healthcare, however if I succeed in my mission, healthcare will be improved in the process. In my experience, a period of frustration and hardship…… Continue reading My mission is NOT to improve healthcare…
Balancing or not?
I find it very difficult to find the right balance. The problem is of course, that balance is key. If we didn’t have balance, what would we have? There are so many different kinds of balance: there is a balanced diet, life-work balance, balancing your accounts, etc. Compared to English, the Swedish language does not…… Continue reading Balancing or not?
Always a patient?
The first week of July every year is a very special week on the magical island of Gotland, off the east coast of Sweden. This is the week when the already extremely popular capital of the island, Visby, becomes even more over-crowded, when a very large number of politicians, policymakers, lobbyists, journalists and even one…… Continue reading Always a patient?
Learning through observations
When I was diagnosed with Parkinson’s at the age of 32, I was of course devastated. I had a nine-months-old baby at home and they tell me I have an incurable, neurodegenerative disease…? I felt like I was inside a black hole and thought I would never smile again. However, with a baby in the…… Continue reading Learning through observations
What is the outcome of healthcare?
As a person living with a chronic disease, I am very grateful to healthcare. I would not be able to live my life like I want to and like I do, if it wasn’t for healthcare. I am completely dependent of my medications, in fact if it wasn’t for my white, red and pink pills,…… Continue reading What is the outcome of healthcare?