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 work as usual, went to a few meetings in the morning, more or less ‘business as usual’. For lunch, I thought I’d show my two colleagues the brand new auditorium and the lunch restaurant there, so we took a short walk and went into the building that looks like a giant glass bowl. Of course, if you give three engineers the choice of three different dishes for lunch, they will pick one each. We went looking for a table, sat down with salmon on a bed of fennel, a giant ball of mince of lamb with mash and a Swedish quiche on a bed of greens, and no, the woman in the party (me) did not have the quiche…

Having finished both the food and the mandatory Swedish ‘fika’ (coffee or tea plus something sweet, like a cookie or cake or similar), we took our trays and made our way through the spacious restaurant towards the place for dirty dishes and I found myself thinking: “hmmmm, if I were to see someone I recognise sitting at those tables, I would probably find myself freezing…”. For those of you readers lucky enough to not understand the meaning of that sentence, here is a brief video from youtube (for the extra interested, look here). There is a lot to be said about this mysterious speciality of a fascinating disease, but that’s for another day, back to the restaurant…

You will probably find this just as hard to believe as my brain did, but exactly as that thought (“hmmmm, if I were to see someone I recognise sitting at those tables, I would probably find myself freezing…”) had flickered through my brain, I actually did see someone I recognised, and even before I had consciously noted that the pattern recognition system of my defective brain had identified a match with the increasing numbers of posts in the “database”, my knees had stopped working… As an immediate result, my feet were completely stuck to the brand new floor. Unfortunately, the rest of my body hadn’t been made aware of this sudden change of priorities, and therefore continued in the previously agreed direction. Before I knew it, my knees were hitting the aforementioned floor (ouch!) and my adrenaline levels skyrocketed. The most unexpected thing is, would you believe it, that I didn’t drop my tray!!!! The other guests in the restaurant applauded as I got back up on my feet, with the tray still intact. I made a sort of curtsey and handed over the tray to the man who completely unknowingly put me in this awkward position by being someone I knew; one of my PhD supervisors as well as a neurologist. He completely understood why I was looking like I was glued to the floor, as did the person he was having lunch with; a professor in neuroscience, and the former came to help me. I have no idea how, but I made my way towards my surprised colleagues and we left the restaurant full of people with an interesting story to share at the dinner table. My knees were tender from the impact, but more than that, my ego was badly bruised…

When the shock had settled slightly, I decided that I would do my best not to let this limit my life any more than absolutely necessary so after some Facebook facilitated advising with a few people around the world, I decided that I needed a new friend. The decision did not come easily and using it still takes a lot of “pride swallowing”…

Would you help me choosing a name for her?

To be continued…

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? 🙂