People sometimes ask what it feels like to have Parkinson’s disease. It’s really difficult to describe. Parkinson’s is ever-present but does not cause me acute physical distress – not at the moment anyway. The only physical pain I sometimes get is in the back of the neck, especially when I’m walking or when I’ve been sitting for some time. The body strains to keep everything going, but that strain to communicate from brain to limb seems to get clogged in the neck and the dull pain prevents me from relaxing. Something similar happens with my exercise bike: nice comfy seat, large pedals, supporting bars and handlebars… but the optimum cycling position becomes a pain in the neck after a couple of minutes and forces me to punctuate the cycling with moments of supporting my neck.
Movement is slow and sometimes erratic. I first noticed this a few days before I was diagnosed when I couldn’t move my wrist to pick up a glass. It’s quite scary. You ask yourself what’s wrong. You can try looking at the limb and concentrating to get it to respond. Nowadays, further into the disease, there are moments when it is stressful. For example, sitting at a table with colleagues or friends: ‘Will I be able to move my hand to pick up the soup spoon or will I get stuck before I’ve even started?’
One form of exercise I do weekly is tai chi, recommended by my consultant for improving balance. In fact, subtle changes of position in the exercise imitate everyday movements which I am losing. At the very beginning of the tai chi form, there is a slight shift of the right foot which I really have to concentrate on. The video illustrates this. If I manage to move my foot with little effort, I know that brain and body are communicating and things will go well.
parkinsonSpace 