I read a lot of stuff online about Parkinson’s Disease, and the need to exercise. Groups that I belong to on Facebook continually bang on about it; slogans proclaim “Exercise is medicine”, while others tell you that exercise “delays the disease”. I’m not one of nature’s exercisers, never have been, but I do have Parkinson’s Disease, I am supremely unfit, and I have put on about 14 pounds since I had my Deep Brain Stimulation surgery in April, so I decided it was probably wise to think about eating less ice cream and biscuits, and to try to build on what little exercise I do. Currently my daily exercise consists of two dog walks – a quick 10 minutes in the morning, and a more leisurely 20 to 30 minutes in the afternoon. “Start slowly” I tell myself, “build up gently to more strenuous exercise”. I decide that when I take the dog for her morning walk I will jog around the perimeter of the football field, rather than just walking. I can do that! If I start to tire, I can always stop the jog and walk the rest of the way. So, I put on my running wellies, and make my way over to the football field behind the village hall with the dog in tow. Dog off the lead, I start a nice relaxed jog down the right hand side of the field. No problem! Two thirds of the way down the field, I’m starting to puff and pant, but that’s fine – I’ll just jog half way today, and then day by day I can slowly increase the distance until I achieve the complete lap! I reach the bottom of the field, and turn left to jog the width of the field. Any moment now, I tell myself, I’m going to stop jogging and walk the rest of the way. How right I was! My running was speeding up rather than slowing, and I start leaning forwards more than is strictly advisable. I’m basically out of control, and there doesn’t seem to be anything I can do about it other than fall over. Which I do. Spectacular face plant! Grass and mud up to my elbows, and grass stained knees of a decent pair of jeans. How glad am I that there were no witnesses? I pick myself up and walk the rest of the way around the field and home.
My wife is really concerned when I tell her what an idiot I am, but there’s no damage done apart from a mildly bruised ego. And then I get to thinking (careful now…) about my brain and all the hardware in my head. As I understand it, my brain is basically floating around inside my skull in a bag filled with fluid, therefore it moves. The leads that are in my brain are anchored to my skull where they exit the holes that the surgeon has drilled. How much of a bump can I sustain before my brain is jerked sufficiently to move the leads in my brain from the precisely selected location in the sub-thalamic nucleus? And the answer is…. I simply do not know! I have heard of leads becoming dislodged, but I have no idea what caused them to be dislodged. I think I will have to ask that question of the DBS team at the NHNN. I’m not exactly worried about my brain, but I’m definitely concerned and wanting to know if there’s a limit to how much I should shake my head, or if I could damage my ring main (wiring) by too vigorously towelling my hair dry (“what hair?”, I hear you say). Should I avoid heading a football? Is falling face first on the football field to be avoided?
I have a headache. No, seriously, I have a headache. It has been lurking at the back left side of my head for several days now, so I’m not imagining it, and the recent exertion and/or fall has brought it to the fore somewhat. I take a couple of co-codamol to chase it off (which they do), and get on with the rest of my day.
Symptom check! Dyskinesia – slight, but manageable. Tremor – both sides, varying from mild to bloody nuisance depending on stress levels. Dystonia – present and correct, but manageable. Balance – not great! Voice – better than it has been. Mood – not bad! Energy – well, I managed to find the energy to jog, so much better than the last few days. Back pain – uncomfortable but tolerable. No device changes today – let’s see how the week goes…