The general image of Parkinson’s disease is probably an old man with hands that are shaking, walking slowly and shuffling. In fact, that was my image of Parkinson’s before I was diagnosed myself. And we all know that those kind of images are very difficult to change… or are they?
A friend did an image search on Google for “Parkinsons sjukdom” (the Swedish name for our common enemy) and was surprised in a good way. And since surprises rarely are positive in chronic diseases, I thought I’d share the reason.
In Swedish, the first hit on Google image search is a pic from this blog! I guess that is one of the advantages of living in a small country: it is probably easier to have an impact.
I am very proud to be contributing to changing the image of Parkinson’s
– one blog at a time!
If I could only attend one conference a year, I know exactly which one I would choose: Quantified Self Europe. I have a very special relationship with the Quantified Self Europe conference in Amsterdam. In fact, I actually wrote my first two posts on this blog during the first QS Europe conference in November 2011 (read them here and here).
I have always felt so welcome and comfortable in the QS community, both at all the 3 QS conferences I’ve attended in Amsterdam and the Bay Area meetup I attended in September 2013. I remember watching Caspar Addyman’s ignite talk in 2011 and first regretting that I was sitting in the middle of a row and therefore wouldn’t be able to leave without drawing attention to me… but then I thought again… and I realised that what Caspar was talking about could actually be used for helping people with Parkinson’s. At the next QS Europe conference, we gave a joint talk about that.
When I came home from the third QS Europe conference, I tried to explain to my husband what is so special about QS. I thought for a while and then realised:
At Quantified Self, I forget I have Parkinson’s.
Because at QS, no-one evaluates or assesses you, no-one judges, no-one looks at you and wonders what Hoehn & Yahr stage you are or what your UPDRS score is. At QS everybody measures something about themselves but they also respect your efforts to improve your life and your health without judgement. That is a very empowering feeling!
I am looking forward to attending my first QS Global conference in San Francisco 13-15 March 2015 (see info here) and I hope I won’t be the only parkie there.
Let’s meet in SF in March and share our best ideas to forget we have Parkinson’s!
The image can be downloaded from: http://www.riggare.se/downloads/
I see my neurologist twice a year, about half an hour every time. That’s one hour per year in healthcare for my Parkinson’s disease. During the same year I spend 8,765 hours in selfcare, applying my knowledge and experience together with what I get from my neurologist to manage a difficult condition as best I can. Only during the one hour per year (the red circle in the image to the left) am I in direct contact with neurological specialty care and its clinical practise and guidelines.
And it’s also during this one hour that my condition is evaluated by my neurologist and my treatment is prescribed. But it’s during the 8,765 hours of selfcare (the blue circles in the image, and yes, there are 8,765 blue circles, I am that nerdy ) that the I put my treatment into action. I take 6 prescription drugs, 6 times a day, in 5 different combinations, with 6 different time intervals. Because let’s face it, my doctor doesn’t even know if I take my medications or not.
It is also during my 8,765 hours of selfcare that I can observe the effects of my treatment. And what if I could register my observations in a systematic way and bring to my next neurologists’ visit?
Guess what? I already am!
I am not saying I want more time in healthcare. I really don’t think I need more time with my neurologist. However, I am saying that healthcare needs to acknowledge the work we patients do in selfcare and also start working to make use of our observations for their own knowledge.
Just imagine what we could achieve if we start working together – as equals with different but complementary areas of expertise!
A google search for “What is health?” just resulted in approximately 23 200 000 hits and I think that the number of different answers to the question is far greater still. The quote to the left is one of my favourite phrases about health and it is by the American 19th century author, poet, philosopher and much more, Henry David Thoreau. His words really resonates with me, as a person living with a difficult chronic progressive disease, health is not something I take for granted . But, and it is a big but, I also know that I have everything to gain from being an active participant rather than a passive bystander in the “battle” of my health.
In Parkinson’s, our neurologists assess our health using an almost infinite number of different scales; generic scales like EQ-5D, SF-36, EuroQoL or specific like UPDRS, PDQ-39 and many many more. To my mind those scales have very little to do with my own understanding of health. They are probably useful within healthcare, when you want to compare treatment results across clinics or make health economic evaluations. But do they REALLY measure health?
My personal definition of health is to not allow my condition to limit my life while at the same time not take unnecessary risks.
Given that my most troublesome symptom of Parkinson’s is freezing-of-gait, a strange phenomenon causing my feet to literally seem like they are stuck to the ground (see film clip below), especially in stressful situations, like for example crossing a busy street, you can see where the potential risks would come in.
Of course my definition is pretty much impossible to quantify in an objective manner but nevertheless, this is the way I want to live my life. And healthcare is aware of the risks associated with freezing-of-gait. In fact, freezing-of-gait is seen as a serious symptom, due to the obvious risk of falling and therefore is given a lot of attention from our neurologists. And they have treatments to offer for “advanced Parkinson’s disease”, which this symptom can be one of the signs of. My neurologist has told me that research has shown that with my combination of symptoms, I am likely to be a candidate for deep brain stimulation (DBS), a surgical procedure where electrodes are placed deep into the brain and connected to a kind of “brain pacemaker” placed under your collar bone. Don’t get me wrong, I have plenty of friends who have had this procedure with very good results and I am very happy that advanced treatments are available. But I am determined to make sure I have tried everything else in my powers before I let someone poke my brain while I’m awake (yes, the operation is performed with the patient awake to ensure that the desired effect is achieved from the electrodes…).
In summary, healthcare’s solution to my main problem is something I want to stay away from for as long as possible. And if I wasn’t such a difficult patient (I sometimes call myself a “patient extremist”), I might have gone for the operation. Instead I went to Portugal for a week of intensive neurorehabilitation (see more here and here) and came back with new insights and belief in my own abilities. Portugal gave me a good start and I know I need to keep working on it. I also know that I may still need the operation at some stage but am now convinced that it will be some time yet.
In short: healthcare knows a lot about medicine, but to me health is a bigger concept than medicine and healthcare doesn’t always have the right answers to my questions.