First day of QS Europe 2011 in Amsterdam

My first ever day at an unconference and the impressions have been numerous. I love the idea of having the focus of the meeting on the breaks between the presentations, since everybody knows that the really sparking ideas are born over a cup of coffee and some strange looking local speciality (in this case I would call it as the mandarine mousse for the win, or maybe the odd-looking fruit with thorns or spikes…).

Among the ideas/impressions I will take away from today are:

  • The AMAZING workshop on Personal Data Visualization, curated to perfection by the ultimate mix of design, art and data management in the trinity of the hosts.
  • The tweet: @martijnhulst: Nice quote: remember if you’re not paying for the product you are the product. #privacy #qs2011
  • The discussion on how to address data that could be percieved as negative for the person.
  • and of course all the amazing meetings with generous, amazingly passionate and fascinating people!

Health 2.0 – “The patient joins the team”

Being a student of Health Informatics at the Karolinska Institute has introduced me to a number of interesting concepts. Already during our very first week in August of last year, we heard about “patient-centered healthcare”, “shared decision-making” and “patients as co-creators of health” and to a highly opinionated and severly inquisitive patient such as myself it is quite simply music to my ears. It was simply a match made in heaven and me and my student colleague with MS (yes, what were the odds of TWO highly opinionated and severly inquisitive brain disease victims actually ending up in the same class….) had a wonderful time asking our teachers to elaborate on the patient perspective to the point where I would guess our more normal classmates of medical and computer backgrounds from all over the world probably wanted to smack us to make us keep quiet.

However, the true “Eureka-moment” came when I first heard about “Health 2.0”, which in the words of Lucien Engelen means “the new relationship between health care provider and patient” (from A little booklet about Health 2.0, 2010). I would guess that the definitions of Health 2.0 are at least as many as the number of people working in the field, however to me personally it signifies Patient Empowerment in its true meaning, giving patients wanting to take more responsibility for their own health a means to do so by in the optimal way using the Internet and social media. To me Health 2.0 is about a
more equal sharing of responsibilities within healthcare by acknowledging the patients expertise and experiences of their illnesses and collaborating to give all stakeholders a better outcome. To me this is the only way to meet the increasing burden of illness in the world and I am certain the “revolution” is just starting. See you on the barricades!

This video is to me an excellent example of what my dream of future healtcare looks

In your face PD!

We all know that excercise is good for us. We do. And those of us with PD know
that for us excercise is more than good, it is essential. Yes, I know, we know it, but we don’t always act upon it.

I spent my first 30 odd years actively avoiding every kind of physical excercise, and quite successfully so. In hindsight I can see several reasons, the most important being the severe resistance my PD symptoms gave me. I mastered avoiding PE classes in school and never sat foot in a gym. But one day found me better medicated and more
motivated and a very unfamiliar feeling filled me… I actually enjoyed excercise… I was shocked!

Let’s face it, the proof is overwhelming, EXCERCISE IS GOOD FOR US… There are numerous scientific articles to that effect, the most recent probably being: And excercise doesn’t have to be going to a crowded gym or running endless miles on a dusty road. For me, the most rewarding training is putting my sometimes failing body to good use around our country house, doing gardening or similar. I had not given it much thought though, until the other day, when I found myself hacking away at a pitiful excuse for a lawn that we were trying to turn into a patio. The plan was to take away a few inches and then fill it up
with gravel and top it off with a substantial number of reasonably flat large stones. Suddenly it dawned upon me that I was actually enjoying straining my body and found an unfamiliar pleasure in using tools designed centuries ago when gardening was more about surviving the winter than a pleasant pastime or
enjoyable hobby.

A few days later, I realised why I had enjoyed blistering my hands and working myself to a sweat. It has to do with fear, with love and fear. Because I will admit I fear PD. I fear what may come. I fear the unknown. But I have a choice. I can either let the fear paralyse me or I can use my fear to drive me to working against what I fear. And I feel love doing things that works against the things I fear. So from a former excercise-phobic and with every aching muscle I get from working out, I say:
In your face PD!

Swedish midsummer

Although Sweden’s national day is on the 6th of June (and incidentally wasn’t made a bank holiday until 2005…), the true national day of Sweden by any standards must be Midsummer’s eve. On the Friday closest to Summer Solstice everyone in Sweden with their own summer cottage will celebrate the longest day of the year together with friends and family.

The summer cottage (“sommarstugan”), is the Swedish tribute to our rural heritage and our ancestors who painstakingly lived on what the fields could provide. The typical sommarstuga is a small house or cottage, almost always made of wood and mostly a log cabin and a lot of them originate from the early 20th century and was originally built to be the home of a large family farming the surrounding land. The traditional and most usual colour is a special kind of red paint called Falu red ( and as you can see below, ours follow that prerequisite, althoug it is not more than 40 years old.

Sweden has around 10 million inhabitants and about 1 million summer cottages and most of these cottages are shared within a family. This means that probably more than 50% of Swedish families have access to a sommarstuga.

Come the Thursday before Midsummer every year, so does the big exodus from Stockholm and other cities out into where Sweden was built: the country side. Tradition has it that every year, around 15-20 people gather at our country house to follow the old pagan traditions in celebrating the fertility of the land in the absolutely least subtle way imaginable…. We take a 15 foot pole, put a crossbeam a few feet from the top where we hang two large rings and then put green leaves and flower all over to make it pretty. After that the pole is erected and stuck firmly into the ground, the end with the rings up…… Very subtle indeed….

The mandatory luncheon consists of boiled new potatoes, pickled herring (“sill”) in every shape, form and flavour imaginable (and trust me, when it comes to sill, Swedes are not lacking in inspiration) and to drink: lager and Swedish Aquavit (“snaps” or “nubbe”) in every shape, form and flavour imaginable (and trust me, when it comes to snaps, Swedes are surpassed by none in terms of innovatiove abilities). And snaps cannot be drunk without singing, which is why my own daughter already at a very young age, like myself, used to sing drinking songs to her babysitters.

After lunch the dancing around the pole commences. Nowadays, the dancers are practically only children and their more-or-less awkward-looking mothers or fathers, whereas in the olden days I am sure the maidens were slightly older and maybe slightly more daringly dressed. The dancing is often accompanied by an old couple singing and playing the harmonica, dressed in traditional clothing.

The ones still standing after such an ordeal participate in the evening barbecue, sauna with swimming in the lake and maybe some more singing until the sun sets… or, wait a minute… the sun hardly sets on Midsummer’s eve… hmmmm…. that must be why Midsummer’s Day always feels so difficult…

Being brave

Last year I did the the bravest thing I have done in my life. And to me being brave has very little to do with exposing yourself to all sorts of life-threatening activities such as parachuting or bungee-jumping or even riding a bicycle down a ski slope in Slovakia in the summer (one of my friends has actually done this…).  Well, I guess these things are also brave in some sense, but most of the time they just seem unnecessary… at least to me, but then again maybe it just comes with the territory of having a movement disorder.

To me courage has to do with following your heart even though you don’t know what will be. I read a quote from some old Greek last year and it goes something like this (if you think the translation is a bit dodgy that might be because it has been translated from Greek to Swedish and then to English): “Where you talent and your passion meet the needs of the world, there lies your calling”. I have found my calling. I am just about to finish my second semester at Karolinska Institute in Stockholm studying Health Informatics (HI). HI is simplified all use of information and communication technology within healthcare in the broad context and here lies my calling. I want to use HI to empower myself and fellow chronic disease patients by giving us tools for understanding our situation better, tools for more effective communication with our doctor and nurse and tools for education. Education of ourselves, education of healthcare professíonals, education of our near and dear as well as awareness for everybody.

In my point of view, this is the only way healthcare can meet the increasing number of chronically ill without having the cost spiralling totally out of control. The only way is to give patients the choice to contribute if they want to, to allow patients to take responsibility for their own health, for their own care.

I am not saying this will be easy, but that is not a reason for not trying… We will all have to be brave and then the sky will not even be the limit!

(by the way, if any of you would happen to know who was the originator for my (probably severely and brutally disconfigured) quote about callings, please just let me know, OK?)

The first diagnosis

My previous blog ended: “I did not get back to them”, and I did not.

However, my mother did. In my medical record I found that exactly 2 years after my first visit, my mother called the clinic, worried about my deterioration. I was given another examination in October of 1989 and in the record I can see the professor’s words: “…at the exmination today, as previously noted, a dystonic cramp is observed… relatively distinct extrapyramidal symptoms…. dystonian in nature….”.

I was sent to a number of examinations: MRT, eye exam, EEG… My memory from this occassion is that the professor said that “well, now he could see that I did have some sort of neurological problem and it was probably something called generalised dystonia”. His assessment was that the symptoms were not difficult enough as to justify medication at this point. At my visit the day before my 20th birthday, he saw fit to give me my first medication and when starting taking it, I felt like a completely new person. For the first time in literally years, my body actually responded to commands, I could walk as a “normal” person. I felt strong, happy, I felt truly alive!

The initial boost-effect lasted about a week. The medication still had an effect though, it was just not as strong as in the beginning. I got on with my life, at the time being a student of chemical engineering, tried my very best to see the positive things in life. Which was actually not very difficult, seeing I was in love :-). I had just met the man who 17 or so years later became my husband (as well as the father of my child… although since that happened before marrying, let’s not make a big deal of that…). This was in the early days of the internet (yes, I am that old…) so I did my fair share of searching for information on this mysterious disease (a disease that for some peculiar reason responded positively to medication for Parkinson’s Disease… who would have guessed…).

Generalised dystonia was the first diagnosis I was given for what troubled me… but not the last.

The first meeting

I think I was around 13 years old when I first realised that my body did not function the same way as others’, I might even have been younger. I remember sitting on a chair in a school, community centre or something similar in the village of Ängersjö in the north of Sweden listening while my relatives played their dance music with violin, accordion and vocals. It might have been the winter break and my family were in Härjedalen. The music was good and people were tapping their feet with the rhythm. I tried to follow their example, but I remember my surprise when my ankle refused to respond. I did my best to hide it so that nobody would notice.

Years passed and more things were gradually added to the list of things I had trouble doing: Why were my wrists so difficult to move? Why did I sometimes find it very hard to balance my bicycle? Why did I have such a hard time at physical education at school? Why did I move so slowly? Why were my muscles so tense and refused to relax?

I think that subconsciously, I chose to cope with the non-compliance of my body by asserting myself intellectually. My mind could take me where my body would not. I read constantly, I read everything I could find and I read faster than anyone else.

When I was about 16, I met my first neurologist, an associate professor at the Karolinska Hospital in Stockholm. I requested my patient records a few years ago and they contain his assessment from June 9 1987: ” … . Referral due to tremor and balance problems … Assessment: hard to evaluate … Possibly a mild form of dystonia … not particularly alarming symptoms at present… Patient was instructed to contact the clinic if the problems would increase … “. I can honestly say I do not remember much of the meeting, but I remember the way the professor expressed himself, he said: “There is nothing wrong with you, your problems are psychosomatic, but please contact us if you get worse.”

I did not get back to them.

Downhill skiing

I don’t presume to have a lot of regular readers and probably fewer still will have followed me from the beginning. Which is why I would not assume that anyone remembers at what age I had my first PD symptoms. However, for some strange reason they coincided in a slightly alarming way with the first time I was trying downhill skiing. I was in my early teens and for some reason, my parents had decided that the family would spend Christmas in the Swedish “alps”, having a wonderful time skiing together.

I can tell you that trying to sort two pieces of wood the same height as myself attached to me feet, while in any kind of controlled manner descending a steep hill covered in snow and ice is difficult enough without adding the complication that a declining balance, difficulty shifting the body left and right and a tendency for my body to not comply to motoric instructions, especially under stress, that my first experience with PD threw at me. I honestly believe that no-one has a higher falling-to-standing ratio in a ski slope than me. The good thing was that I quickly developed my skills in reassuming a standing position, even from the most awkward falls and of course the strange fact that I didn’t break any bones in my body.
I was by my friends fondly nicknamed “the human bowling ball” and I can, even now over 25 years later, easily see the inner picture of myself going down a slope with the victims of my skiing-disabilities falling right and left.

This trip down memory lane was actually brought on by a trip to a bowling alley I did in January. It was the family’s annual bowling tournament to celebrate our mother’s birthday and this year her offspring treated her to a few days skiing together with all of us. At  the time, the skiing adventure seemed reassuringly distant, but as time went by, the distance diminished to the point that departure is tomorrow. So I would like to issue a warning to all those planning a peaceful day in the slopes of Dalarna these coming few days: beware of human bowling balls….

Actually, the truth is that medications and training at the gym has provided me with both the balance, muscle strength and control enough to enable me to descend a ski slope in a more greceful manner and my falling-standing ratio these days might even be below 1. So I am looking forward to a few days of family quality time with my own small family with extensions summing up to 7 adults and 5 children ages ranging from 2 months to 8 years. Mind you, I didn’t say quiet family quality time….