Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

Current Symptoms: October 2010

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I’ve alluded to some of these in other posts, but it seems as if it is worth describing exactly what it is like (for me) to have the early stages of Parkinson’s.

I suppose that the thing that springs to mind, for most people, when you mention Parkinson’s, is the tremors. Shaking, palsy – call it what you will, it’s the same thing. But a lot of things characterise Parkinson’s and, as I understand it, tremors are not the most conclusive. When I was first diagnosed, my mother told me a dreadful little story about one of her elderly neighbours, who was apparently diagnosed with Parkinson’s and then, several years down the line, he was told “Oh no, you haven’t got Parkinson’s – it was just a bad case of the shakes”. I think she intended to comfort me with that sorry tale of casual misdiagnosis (followed by such a vague alternative!), but it really didn’t work – not least because “the shakes” were barely there at all for me.

My own symptoms seem to be characterised by a tenseness. It feels as if every affected part of my body (with the possible exception of that sticky out thumb) is trying to curl up into itself. My left arm doesn’t hang straight; it bends at the elbow. The fingers on my left and cleave tightly together (so much so that you can see the white pressure points) and curve just a little too far in towards the palm. The thumb often sticks out, almost at a right angle. The toes on my left foot curl in towards my foot, and the foot itself is, more often than not, pointing in towards the unaffected right foot. This causes my left foot to roll outwards, so that my weight rests on the outer edge of the sole, which is not comfortable. All of the muscles down my left hand side seem to be pulling at once, all the time.

Constant tension results in muscular ache, which I can relieve somewhat with exercise. Yoga helps with this – it’s all that stretching – but so do vigorous aerobic types of exercise.

I did think, at one point, that the tension might cause the tremors (all that taut energy must be released somehow), but my consultant disabused me of this notion. Apparently they are separate.

I do get tremors. They are usually quite mild, but they increase with nerves and, to a certain extent, tiredness.

Then there is the lack of response. One person, more knowledgable than many, asked me if I got paralysis. Slightly taken aback – I had never thought of it in these terms before – I acknowledged a certain selective, temporary paralysis. But really, it is just slowness. Everything will move – just not always straight away, and not always as rapidly as I’d like. Apparently it is not uncommon, later on in the progression of the condition, to feel as if your foot is stuck to the floor.

Part of that slowness is a sort of jerky, ‘cog wheel’ motion. Smooth movement is one of the things that dopamine does for you. Lose the dopamine, and the smoothness of movement goes. I sometimes feel like a robot in need of oiling.

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