3:56am. Crap. I used to be able to sleep like a champ. I’d fall asleep anywhere, anytime. To be fair, that is what I still do — now I can’t always sustain it. I toss and turn. I have disturbing, half-remembered dreams. And I forget to take the pills the doctor prescribed to help me sleep. Shit.

Parkinson’s is robbing me of my certainties. I can’t sleep — is it stress? Is it Parkinson’s? (This being Saturday morning, probably the latter.) I forget things — is this because I always forgot things? (Most likely, yes.) Is it Parkinsons, giving me a little extra? At least if my hand shakes I know it’s Parkinsons. I functioned really well yesterday — will I be ok today?

Except yesterday sucked. It was the last day before the school holiday. We’d had a break-in in school and I was overrun with mid-level behavioural tasks anyway. It was the end of a couple of fairly manic weeks. Just like earlier in the week I was getting super tired. (Great Parkinson’s Irony: Super tired? Check. Unable to sustain sleep? Check.)

And my hands were stiff. And then they shook. At this point my tremors, when they come, tend to be imperceptible to anyone but me. I hold my hand out and I can barely see the movement. But I feel it — a jittery instability that’s just out of view.

It feels a lot like fear.

The thing is I’m not really afraid. Not really. This disease will eventually take a lot from me, but not what I really need — my family, my sense of self. But my body’s physical response to the disease, at the moment — when it doesn’t just feel like fatigue — feels like nervous jitters. It feels like I am on edge. And so it make me be on edge.


Before my diagnosis I was afraid I was losing it. My work involves a certain amount of public speaking — most often to assembled staff. For months I thought I couldn’t do it any more. I would try to address the morning meeting and my words would dry up, I would feel the vibrations through my body. I wouldn’t be able to concentrate on what I was saying. I hated it. And I hated that I couldn’t do what I could do previously. I was never the most comfortable public speaker but, when I got started, I was quite good at it. Not any more.

It felt like stress. And I was always pretty good with stress. I reflect. I am reasonably self-aware. I tend to realise when I’m stressed and figure out how to shake it off. Except I had no clue what was stressing me when I spoke.

It stressed me right the fuck out.


I came home early yesterday. I was too tired and shaky to be of use. I left a lot of work behind me. It really bothers me — the feeling of uselessness, however temporary. I sat on the sofa at home. And I vibrated. Even as I relaxed my neck, my head was bobbing to its own rhythm. Probably anyone watching me would have seen nothing amiss. But I felt it. Right through me. Hopefully today will be better. On four hours sleep.