MyOwnPROMs

This poster was presented at the 10th anniversary conference of Medical Management Center at Karolinska Institutet 29th and 30th of May 2012.

“From Ideas to Health” – presentation from KI on 30th of May

On the 30th of May, my main PhD supervisor, professor Staffan Lindblad and I gave a joint presentation at the 10 year anniversary conference of Medical Management Center at Karolinska Institutet, Stockholm, Sweden. The title was “From Ideas to Health” and the presentation can be seen below (part 1 is first Staffan and then me, in part 2 Staffan continues). The slides from my part of the presentation can be seen separately below the first film.





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Learning through observations

When I was diagnosed with Parkinson’s at the age of 32, I was of course devastated. I had a nine-months-old baby at home and they tell me I have an incurable, neurodegenerative disease…?

I felt like I was inside a black hole and thought I would never smile again. However, with a baby in the house, the smiles came back and I started to live again. Slowly but steadily, I was able to understand more about this strange disease and even more importantly, I was able to understand the features of my own particular flavour of Parkinson’s.
Because, as we all know, Parkinson’s is highly individual in nature and my specific combination of symptoms are probably more or less unique to me.

What I found was that by more consciously observing myself and my symptoms and especially the effects my medication had on me, the more I learned about the variations and patterns of my disease. And the more I knew about the variations and patterns of my disease, the more I could understand what made the symptoms worse, what made them less troublesome and how to get through difficult periods when nothing seemed to work.

Almost 10 years have passed since my diagnosis and every day holds challenges due to the disease (and of course also challenges completely unrelated to the disease). Nevertheless, I truly believe that I am in better shape than I have ever been, both physically and psychologically. And maybe it is all self-deception, but who cares as long as it works 🙂 . I make an effort to see good things in what I experience every day and I am very happy to be able to do all the things I do and all the fantastic people I meet. Of course, not every day is great and of course there are people I wish I had the time to meet more often than I do, but that is no different from most everybody else.

The more I learn and acknowledge my own personal challenges, the more I can take them into account when doing my best to navigate the interesting ocean of life.

 

What is the outcome of healthcare?

As a person living with a chronic disease, I am very grateful to healthcare. I would not be able to live my life like I want to and like I do, if it wasn’t for healthcare. I am completely dependent of my medications, in fact if it wasn’t for my white, red and pink pills, I wouldn’t be able to move around… at all… Without my rigid medication regimen, (6 different prescription drugs, 6 times a day, in 6 different combinations and with 6 different time intervals…), I would most likely be bedridden and very probably catch some unpleasant problem that comes with a sedentary lifestyle, like thrombosis or pneumonia.

I am lucky enough to have found a neurologist who both believes in and practices Shared Decision Making and this has probably accelerated my path towards becoming an extremely active patient. And for me, to participate as much as possible in decisions about my health, makes me feel more in control, even on bad days, because most of the time I know why I am having a bad day (lack of sleep, too much stress, not enough exercise, take your pick…). And to me this is the outcome of good healthcare, and I also want to claim that this outcome is equal with health.

To me health is an individual state of mind where I most of the time successfully put myself and my current situation into a context of wellbeing.

… and how can you measure that…?