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!

(References: http://en.wikipedia.org/wiki/Health_2.0,
http://lucienengelen.posterous.com/21389951)
This video is to me an excellent example of what my dream of future healtcare looks
like:

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: http://www.ncbi.nlm.nih.gov/pubmed/21750523. 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 (http://en.wikipedia.org/wiki/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…