Things To Try When Your Head’s On Back To Front

This is obviously a post about Dystonia, so if you don’t know what this is pop down to http://www.dystonia.org.uk, find out and put a pound, dollar or euro into the wonderful Dystonia Society’s fundraising tin. OK, you can go and check out wwww.bbc.co.uk now.

Back on Boxing Day, my last Botox treatment stopped. Switched off. Gave up. I always assumed that the treatment would decline in effectiveness, on a linear basis, across the twelve week cycle. Clearly, that’s not the case for me. Or perhaps the rate of decline is over 6-7 weeks. Anyway, the net result was that my head snapped left. And wanted to stay there. To use an ancient Anglo-Saxon phrase: Oh bugger.

In spite of this, I’m still managing to hold my head straight enough to drive for 20 minutes. This means that I can get to the gym.

A first, last week, after a year’s absence.

Surprisingly, I managed 8km on various bits of cardiovascular equipment. This week, 14km. Plus a short swim.

Target is a minimum of 16km per week, which should get me back to optimum dressage competing fitness, in … a while. Also, it might also have the wonderful effect of shifting half a stone of lard off my stomach. But I am the eternal optimist.

As I got on the treadmill last week, I noticed, as on many other occasions, Dystonia symptoms worsen when I start to exercise. In spite of this, it was great to be able to walk as fast as I wanted and feel safe – this meant shutting my eyes, letting my head go where it wanted and keeping hold of the safety bars on either side of the treadmill.

I must look, at best, slightly odd, but I’ve decided that actually, I don’t care if people stare. I want dressage rossettes and that means get fit. This means more to me than worrying about how people think I look.

I’m now working on trying to isolate the impact of dystonic spasms in other muscles; when I walk at speed, dystonia worsens, but tension in other non-affected muscles increases as well. I’m trying to consciously relax these groups, in the hope that I can replicate this when I ride. Tension in the saddle is a bad thing!

This, I think, will be a long process, but you have to start somewhere.

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About Dystonia Girl

Horse rider who loves to blog and do lots of other things too. Lives with, but is not defined by, a rare neurological condition called Dystonia.
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3 Responses to Things To Try When Your Head’s On Back To Front

  1. I admire your tenacity, DG … wishing you all the luck in the world. x

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