I really want to start taking the mannitol that I recently purchased, so need to record the current state of my symptoms so that I can tell if the mannitol is having any effect. The easiest way to do this is by turning my DBS off and filming myself. I have been planning to do a couple of “DBS on/DBS off” videos for my YouTube channel in any case, so perhaps I can kill 2 birds with 1 stone!
I turn my DBS off. I wonder if the neurostimulator turns itself off gradually rather than being instantly switched off – it takes a few minutes before I feel any difference. When the NHNN play around with my neurostimulator (when they re-program it) then I feel the changes instantly. I set up the camera and tripod and film myself doing the usual motor skill exercises that the neurologists have us do:- drawing a freehand spiral, a sample of handwriting, signing my own name. I record my tremor by drawing a straight line (using a straight edge) on a piece of paper, and then slowly attempting to draw a freehand line next to it, my tremor showing as a deviation either side of the straight line. I pour a bottle of beer into a pint glass without resting the neck of the bottle against the glass while pouring – I actually manage to pour it without spilling any, although I have to stop and regain control 2 or 3 times.
By the time I finish filming, I’m really glad to turn my DBS back on. I had forgotten how tiring it is to just be shaking constantly, let alone the discomfort from my dystonia. Tremor control returns with a welcome tingle of electricity that I feel throughout my body – I’m so grateful for my DBS!
I walk the dog, get the logs in, and then clear away the camera and related paraphernalia. I just have time to light the fire before my wife returns home from work.