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:
Saturday, 28 May 2011
Tuesday, 17 May 2011
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?)
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?)
Sunday, 24 April 2011
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.
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.
Tuesday, 12 April 2011
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.
Wednesday, 30 March 2011
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....
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....
Sunday, 13 March 2011
What is it with PD and 1971?????????
What on earth happened in 1971 that made PD run wild???
I started thinking when seeing Bryn's pic of him in his much becoming Tigger-suit (alledgedly a birthday present, but we don't believe that, do we....?), taking it easy after his ordeal of entering into the "naughty forties" (I do hope that is not an unappropriate expression in English... if so, I am going after the Brit who wished me welcome into them a few weeks ago... you know who you are...).
The thought I had was not at all related to Winnie the Pooh or even me realising that I will never see the stories of Christopher Robin and friends in the same way again, but more to do with PD.
In my mind I went through my PD-network of friends and a surprisingly large number of them are in their early 40's or slightly younger... I had the good fortune of celebrating my entrance into the lovely age of 40 together with a whole bunch of my wonderful friends a few weeks ago and I know that several others of the PD friends I know from the World Parkinson's Congress in Glasgow last September-October and from other places will join me and Bryn soon.
I had a talk on the subject with Alex (Flynn) and we were wondering whether the world went crazy in the early 70s? Maybe this is a premonition of something? Does anyone know of any large demographic studies that would be relevant?
I started thinking when seeing Bryn's pic of him in his much becoming Tigger-suit (alledgedly a birthday present, but we don't believe that, do we....?), taking it easy after his ordeal of entering into the "naughty forties" (I do hope that is not an unappropriate expression in English... if so, I am going after the Brit who wished me welcome into them a few weeks ago... you know who you are...).
The thought I had was not at all related to Winnie the Pooh or even me realising that I will never see the stories of Christopher Robin and friends in the same way again, but more to do with PD.
In my mind I went through my PD-network of friends and a surprisingly large number of them are in their early 40's or slightly younger... I had the good fortune of celebrating my entrance into the lovely age of 40 together with a whole bunch of my wonderful friends a few weeks ago and I know that several others of the PD friends I know from the World Parkinson's Congress in Glasgow last September-October and from other places will join me and Bryn soon.
I had a talk on the subject with Alex (Flynn) and we were wondering whether the world went crazy in the early 70s? Maybe this is a premonition of something? Does anyone know of any large demographic studies that would be relevant?
Saturday, 29 January 2011
The joy of serendipity
Have you heard the story of the Three Princes of Serendip? Serendip is Persian name for Sri Lanka and the story is alledgedly based on the life of the Persian King Bahram V, who ruled the Sassanid Empire (420-440), according to Wikipedia, our time's equivalent to the Oracle of Delphi.
Anyway, the princes of the story are brothers and sons of King Giaffer of Serendip. The King wants his sons to be adequately educated to be fit to follow in his tracks and gets them the best tutors available. To make absolutely sure that they have what it takes, he sends them away from Serendip to prove themselves worthy of the throne. On their adventures through different countries they observe signs, analyse them and draw conclusions leading them so much further than they could ever have dreamt and in completely unexpected directions. Hence the meaning of the word serendipity.
It strikes me as an interesting analogue to clinical research in general and of course there are numerous examples of serendipitous discoveries leading to ground-breaking progress in research.
I have personally experienced a lot of serendipity in my life the last few years, so much in fact that I just the other day decided to make myself a necklace in tribute to my new favorite word.
To me this necklace symbolizes all the new very dear friends I have found all over the world the last two or so years, it symbolizes the creativity and enthusiasm released when people are working for a common cause, it symbolizes the strength of the human mind and the amazing things that can happen if you open up your life to the fantastic power of serendipity.
Anyway, the princes of the story are brothers and sons of King Giaffer of Serendip. The King wants his sons to be adequately educated to be fit to follow in his tracks and gets them the best tutors available. To make absolutely sure that they have what it takes, he sends them away from Serendip to prove themselves worthy of the throne. On their adventures through different countries they observe signs, analyse them and draw conclusions leading them so much further than they could ever have dreamt and in completely unexpected directions. Hence the meaning of the word serendipity.
It strikes me as an interesting analogue to clinical research in general and of course there are numerous examples of serendipitous discoveries leading to ground-breaking progress in research.
I have personally experienced a lot of serendipity in my life the last few years, so much in fact that I just the other day decided to make myself a necklace in tribute to my new favorite word.
To me this necklace symbolizes all the new very dear friends I have found all over the world the last two or so years, it symbolizes the creativity and enthusiasm released when people are working for a common cause, it symbolizes the strength of the human mind and the amazing things that can happen if you open up your life to the fantastic power of serendipity.
Subscribe to:
Posts (Atom)