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.
“. 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”
Sara, yes! As a fellow ‘probably a good candidate for DBS’ I feel the same. I worked up a proposal independently of all yours, intels and MJFF research and now publicity please email cos I want to pass it by you. I’m glad I listened to your Radio 4 interview.
Thank you for inspiring me!
Thank you Ron! I’ll email you!