Dystonia Awareness Week 4 – 12 May, 2013

So, this week is Dystonia Awareness Week.  Hats off to the Dystonia Society for push, push, pushing information out into the community and on to the Internet about this terrible condition.

“What is it?”, you ask. In simple terms, it’s a movement disorder and is categorised in a number of different ways depending on the parts of the body which are affected.  Muscles can spasm and do all sorts of odd things e.g. Turn your head to one side.  Whilst the symptoms can be quite distinctive, many GPs have never heard of the condition and know nothing about it.  So, if this is happening to you, get on to the Dystonia Society ASAP for more information, put a £1 or more into their fundraising tin and get down to your GP armed with a request for a neurology referral! Treatments, but not cures are possible.

Don’t under-estimate the effect that this condition can have on the lives of people with it and their families and carers.

A simple example. In my case, dystonia affects my neck and causes my head to turn to the left. At the moment my head is out of line, from the central position by 45-60 degrees, depending on tiredness, stress etc. I hope that my Botox treatment course is going to improve this, but, at the moment:

  • Taking my daughter to school is now a 2 hour, round trip by bus with a walk. The walk is terrifying because I have to cross multiple busy roads and I am effectively blind on my right side. This journey used to take 20 minutes, by car.
  • Meeting people. Looking at people, when you speak to them is an essential part of (polite) human interaction. What happens when you can’t do this?
  • How do you watch TV or read a book, for any length of time?

If you want to know what this feels like, twist your head round to one side, as far as it will go, and keep it there. Comfortable? Thought not. That’s how it feels for me to try and keep my head straight.

If you’re reading this and you have got dystonia, keep positive.  Fellow sufferers are on your side and you aren’t on your own.  If you’re reading this and you haven’t got dystonia, be thankful.

You can reach the Dystonia Society at http://www.dystonia.org.uk.  You can also join the Global Dystonia Registry here and get links to other organisations which work in this field.


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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