It’s a good thing we can’t see into the future.
If I’d have known that one day I would be totally reliant on two Titanium rods implanted into the deepest, darkest recesses of my brain, that these would be wired up beneath my scalp, down my neck connecting to a battery/pulse generator implanted in my chest , I would have been horrified.
It always freaked me out as a kid. You know, that part man, part machine thing. I blame Dr Who; which I watched from William Hartnell to John Pertwee. It was that bloody Davros character half man half dalek that did it. Yep, the thought of it would have kept me wake at nights for years.
But we adapt, and now it seems the most natural thing in the world.
And so today. Lovely and sunny, I decide to go for my usual walk around the park and nature reserve at the end of our street – without my stick.
Ever had a bad idea?
I should explain. I don’t use my stick to rest on or take my weight at any point. I use it to create ‘cues’ (A bit of Conductive Education here) I tend to swing it in front of me, presenting a target for my left and right foot in turn to kick. In this way, I am able to create a rhythmic movement of my legs which approximates steps and allows me to perambulate, albeit with a clumsy gait, even when the oral drugs I take have ceased to be effective and I am in what we in the business call an ‘Off’ state.
I am doing quite well until on the way back I go ‘off’. One of the particlar ideosyncrasies of the way Deep Brain Stimulation works for me is that when the oral medication is working, my gait is adversely affected by an increase in stimulation; so I have to wait for a ‘sweet spot’ in my two hourly medication cycle such that the tailing off of the L Dopa allows me to increase stimulation and as a result, it enables me to walk. As I have said though, it ain’t pretty. I’ll try and describe how it feels as I go ‘Off’. I begin to feel like all my strength and energy are being sapped, meanwhile the muscles of my neck lock up, my jaw becomes set and my head feels like it weighs a ton. Arms and legs stop responding to all but the ‘biggest’ movements, fine motor control is shot. I start to overheat as my body loses its ability to regulate its temperature. Any aches and pains I have got are magnified x 2
The absence of stick proves more problematic than I had anticipated, I start to stumble and my footsteps start to run away with me (Festinating Gait it’s called – lovely phrase isn’t it?) I have to think of a suitable ‘cue’ to control this. I finish up by marching, calling ‘left right’ in my head and swinging the opposite arm, the ‘cue’ being the lower arm seen from the corner of each eye in turn.
It is when turning a corner I discover that my head follows my body without moving, rather than looking into the corner as you would normally. Marching, arms straight, with my big steel toe-capped boots, frozen Parkinson’s mask- face and surgery scars (which look like OS map symbols for a railway embankment or cutting), I am struck by how much I must resemble Frankenstein.
Or rather Frankenstein’s monster as immortalised in Boris Karloff ‘s portrayal in the 1931 movie ‘Frankenstein.’ The creature almost always appears as gruesome figure, with a flat square-shaped head and bolts to serve as electrical connectors or grotesque electrodes on his neck, and thick, heavy boots, causing him to walk with an awkward, stiff-legged gait. It sounds awfully familiar …
Now did you know that to this day, the image of Karloff’s face is owned by his daughter’s company, Karloff Enterprises?
Neither did I.
© Andy Daly 2014