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 efforts to make the world a better place for everyone who will ever find themselves in the situation of being a patient (basically everyone…). This post, with the long title: “Mobile Devices: Know the RISKS. Take the STEPS. PROTECT and SECURE Health Information”, discusses in a very good way some of the issues that our healthcare providers are faced with given the developments in health IT, referring to an US governmental website by the health IT branch of the department of Health & Human services.

I found the website very informative and wanted to find some information relating to the patients’ situation under these circumstances. Luckily, I didn’t have to go far, on the next tab, I found what I was looking for: lots of useful information on health IT from the perspective of patients and families. N.B. that the information on that website is completely applicable to the US only and that legislation can vary between countries. There is however plenty of information of a more general kind that I warmly recommend to anyone wanting to know a bit more about health IT, how it can help you and what you need to look out for.

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 also had trouble walking more than a few hundred meters without starting to lean more and more forward, almost falling over (festinating gait). All the same, I was enjoying my studies in chemical engineering at the Royal Institute of Technology in Stockholm, making new friends and eventually moved in with my new boyfriend.

Time passed and I changed neurologists (I have noticed that, given a choice, people rarely stay with the neurologist that diagnosed them, I think it probably is part of a coping strategy). Around 1991 or -92, the new neuro gave me a medication that gave me some relief from the trouble my body presented me with. In time I graduated with a master in chemical engineering and I started working.

In the spring of 1999, my neurologist told me that he wanted my to try a new medication. It was called levodopa and was mostly used for Parkinson’s disease. He had read about a kind of dystonia that had a positive response to this medication, called dopa-responsive dystonia and he wanted to see if that was what I had.

I took my first dose of levodopa in April of 1999 and it was the beginning of a new life to me! For the first time for as long as I could remember, my body actually responded to what I asked of it! I could move almost effortless and the world was a brighter place. I felt strong, in control and for the first time in my life, having a child started to seem a possibility.

On the 30th of January 2003, our beautiful daughter Frida was born. One of her father’s colleagues said: “She looks just like her father, but she is still pretty”. I was just going to turn 32 and the focus of my life had changed. I was very happy.

In May of 2003, I went to see a different neurologist. I was hoping he could tell me about what kind of research was being done in the field of dopa-responsive dystonia. He  didn’t. Instead, he told me: “But you don’t have dopa-responsive dystonia, you have Parkinson’s disease”.

Parkinson’s disease… Here I was, 32 years old and he tells me that I have an “old person’s disease”… Perception is a strange thing. Hearing him telling me I had Parkinson’s disease changed my life. Having dopa-responsive dystonia was a burden, but the medication worked well and I had read that dopa-responsive dystonia didn’t necessarily progress, it could even go into remission. Parkinson’s disease, however, is a neurodegenerative incurable disease…

Nothing had really changed: my symptoms were exactly the same from before he told me that I have Parkinson’s disease. At the same time, everything had changed, my perception of my situation had changed. I saw nothing but suffering and despair in my future… I felt like inside a black hole and didn’t think I would ever smile again…

Luckily, having a baby that needs you is a good thing in such a situation. Her needing me made me look outside myself and brought me back into the world. In time I learnt that my type of Parkinson’s disease was of a relatively mild form with a reasonably slow progression. I was going to be able to enjoy many good years more.

On the 9th of June 2007, we celebrated our love and were married on the warmest day of that summer. Life is wonderful!

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 my life on the 9th of June 1987. I was 16 years old and had problems with my coordination, balance and fine movements. The neurologist examined me and told me that there was nothing wrong with me, what I was experiencing was purely psychosomatic.

I left the clinic feeling dazed and mistrusted. Mistrusted because I knew that he was wrong, I knew that what I was experiencing was not psychosomatic. I knew that there was something wrong with the way my body didn’t respond the way I expected it to.

My next visit with this neurologist was on the 6th of November 1989. I was almost 19 years old and on my way to start my life. I was studying my first year of a master in chemical engineering and found working in the chemistry lab a challenge. Try titrating with dysfunctional fingers and wrists that won’t move… Taking notes in class and also writing at exams caused me a lot of stress. On the good side, I made lots of friends and had also met the man who was to become my husband, though neither he nor I knew it at the time.

This time the neurologist told me that I had a neurological disorder. He told me that I had something called generalized dystonia. The strange thing is that even though I knew that something wasn’t right with the way my body didn’t do what I asked it to, I was shocked at hearing that I had a disease. To hear the doctor, the expert telling me that there was a name to what I was experiencing made me feel numb.

Perception is a strange thing.

To be continued…

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, the word also comprises the context in which the “patient” finds him/herself, meaning that a “patient” is someone who seeks help from a care provider or a helper for some kind of health issue. If the person with the health issue does not have a helper, he/she is not a “patient” but “only” ill.

This definition got me thinking… So a person with an illness is really only a “patient” in the context of healthcare… Which brings me to the strange picture in the beginning of this post. The picture consists of 8766 circles, each representing one hour and together they make up the number of hours in a year.

I visit my neurologist once or twice a year, about 30 minutes each time in the care for my Parkinson’s. That is one hour each year in healthcare for my chronic disease. If you look very closely at the picture, you might see that one of the circles is of another colour than the rest. That orange circle symbolises the time I spend in healthcare every year for my neurological disease. And the rest of the circles, all 8765 of them, each symbolises one hour I spend practicing selfcare.

In my mind the relationship 1:8765 raises two questions:

• When will we see even a fraction of the resources being spent on improving the one hour of healthcare being invested in supporting selfcare in chronic diseases?
• What to call ourselves when we are spending time in selfcare? 

All suggestions and answers are welcome!

If you want to use the picture, please feel free to download it from this post.

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 people with Parkinson’s via webbased teleconferencing with a Johns Hopkins specialist anywhere in the world. Literally anywhere. The only thing you need is a computer and high-speed internet. If you have your own webcam, it’s good, but if you don’t, one can be provided. For more information, see: more info.

Take this opportunity, email to: pd@jhmi.edu and tell them you are interested in taking part in this. You can also download an information flyer here: Telemedicine Clinic Flyer.v4

I was the first patient in Sweden, will you be the first in your country? 🙂

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 is often followed by insight and new levels of clarity. And the reward for the difficult times is the feeling of satisfaction, equal in strength to the sum of the frustration and luckily twice as positive as the other is negative.

My reward is seeing clearly that my mission is not to improve healthcare, but rather to use my experiences, knowledge and skills to help my fellow patients of all walks of life by giving them tools to strengthen themselves, thereby giving the individual the ability to improve his or her own healthcare meetings.

The sweet feeling of insights… and with insights come responsibility.

I am up for it, who wants to join me?

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 or two ordinary people gather here for the annual “Almedalen week” (Elm Valley) http://en.wikipedia.org/wiki/Almedalen_Week.

I have been invited here to speak at a few different events in my capacity of being an informed (and opinionated?) patient, and look forward to engaging in discussions on “How patient-centered is Swedish healthcare in an international perspective?”, “Does increased patient empowerment lead to better healthcare at lower cost?” and other similar questions.

I had a comment from a friend, making me contemplate my role as a “patient”…
Am I OK with being labelled “patient”?
Do I see myself as a “patient”?

Hmmmm…..

My conclusion is that I am perfectly fine with being seen as a “patient” in certain contexts, as long as I am not seen as “nothing but a patient” or even worse “only a patient”. I can accept that in a healthcare context, I am automatically given the label “patient”, in the same way as I am automatically labelled “Frida’s mother” among my daughter’s friends. In fact, let me share a secret: in healthcare, I label myself “patient” to make the healthcare professionals feel comfortable.

But no matter what, I will always be more impatient than patient!