ON and OFF

JON: With Parkinson’s you are either ON or OFF. Being ON means that you are basically normal. Being OFF takes more effort to describe. My muscles are stiff, my brain is slow (this is called bradyphrenia) and my balance is buggered. In fact, I’m now using my stick whenever I walk. I started off using it just as a badge so that people in the street would treat me as ‘normal’, whatever that means, rather than look at me sideways like I’m some early-morning drunk. But now I find I actually need the stick when I go out, a disappointing deterioration.

It’s been an ON and OFF kind of week, with sadly more OFF than ON. I take my pills at the prescribed intervals of 3 ½ hours, but my morning dose is having less and less effect and all the doses seem to take forever to kick in. Then they work for bit, I feel 100% normal (sometimes even euphoric), but all too soon the little round buggers wear off again, I stiffen up, my balance goes and I generally feel rotten.

Sometimes the OFF feeling sneaks up on me. I might be reading or writing and miss hearing one of the many alarms I have set up around the house. But where a mechanical alarm may fail to grab my attention, my internal clock will soon remind me – my muscles stiffen, my brain seizes up, my speech goes and I get a bad blast of OFFness.

If I could predict the effects I could just adjust the dose, but some days the drugs work well, and other days they don’t. If I’ve had a busy day, I am quite prepared for that to be followed by an OFF day, but the OFFs also come for no good reason at all. I’m told this is likely get worse as the disease progresses, and I will have days when the drugs just don’t (won’t?) work. So that’s something to look forwards to, not. At least the time scale is years rather than weeks.

Honestly, I’m just feeling a bit sorry for myself today. I made the mistake of reading the Parkinson’s UK forum, which is great on a good day but not always a good idea on a bad day. Sometimes ignorance is bliss. This PD thing is beginning to get boring, and I just want a day off – or, rather, a whole day ON would be nice for a change.