People with Parkinson’s sometimes talk about being “on” or “off”.
On is when you are feeling good and able to function well, for example being able to walk or write (relatively) normally.
Off is when you are feeling crap and struggle with movement, either with tremor, slowness or outright inability to move (“freezing”). Or you may be experiencing significant non-motor symptoms like heavy fatigue.
As I have now heard many times from many different people, Parkinson’s is a highly individual condition with varied symptoms and varied progression. But most people experience on and off periods at some point.
The simple explanation for these on and off periods is that the level of dopamine is fluctuating in the brain. This is mainly due to the drugs not releasing their chemicals evenly, so sometimes there is too much dopamine and sometimes too little in the places that need it.
Though I suspect this is not the whole story and even with perfect medication that releases smoothly, there are other factors at play. One of these is the dopaminergic cells themselves which seem to ebb and flow in their production of the precious neurotransmitter. (Maybe, just maybe, the condition reverses its progression a little from time to time – if only we could find out how, that might lead to a cure…)
Although I take the same medication at the same time every morning, sometimes I feel dreadful all day. Other times I feel energised and able to function pretty much as if I don't have Parkinson’s at all.
And today?
Well, most of the day I was “on” but I’m starting to feel very much “off” now with stiffness in my right hand and general tiredness. Time to stop writing and get to bed.
As for tomorrow – a regular Tuesday in the office – I have no idea whether it will be an on day, or an off day, or a mixture of both.
