Monday, 18 March 2013

Waking up to Dystonia Spasm

Waking up to Dystonia can only be described as a having the devil inside you taking over the whole function of the affected part of your body.

Dystonia-  is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.[1] The disorder may be hereditary or caused by other factors such as birth-related or other physical trauma, infection, poisoning (e.g., lead poisoning) or reaction to pharmaceutical drugs, particularly neuroleptics.[1] Treatment is difficult and has been limited to minimizing the symptoms of the disorder, since there is no cure available.

Above taken from Wikipedia

In my case the affected area is my face. Mainly my right hand side. Spasming to the point I have no control over the area whats so ever. When the Spasms are at there worst I lose control of speech which ends up being delayed due to the fact i cannot get control of my jaw. My face screws up and I pull a multitude of what must look like funny faces with my eyes rolling upwards due north, all manner of strange spasming happens making my facial appearance weird to those that don't know me.

I have grown up with this condition, so have come to terms with it myself. But as I grow older the spasming gets worse.

Now interestingly my Father, son, and brother all have this condition and it effects them all in different ways. All linked to the face but some worse than others. I would say that my own dystonia is probably the most problematic of all of us. Strange how it only runs in the Male line as my two half sisters don't suffer at all.

Like me I'm sure most Dystonia sufferers would say they noticed their own form of Dystonia / Ticks become apparent when they hit older teens. Mine became noticeable when I was about 17 years of age.

Those of you who don't know or understand how Dystonia is bought on, most doctors will tell you that Stress is a big factor which in my own opinion is questionable.
Yes I've been through issues in my life that could cause me to be stressed but as i sit here writing this I am as comfortable, relaxed, with no real worries going around in my head. I feel relaxed, but yet my symptoms of Dystonia are really bad today.

I have recently decided to start a blog about the subject of Dystonia hoping that other sufferers will read it and comment, but as i woke up this morning to find myself engulfed in spasm i decided to start it early.

The first thing i did was to video myself for a couple of minutes to show you all what i have to put up with when bad. I'm sure even my own family don't see it this bad. I guess once this video gets around they will see it at it's worst, Friends may view the video and start to understand what i try and describe to them. Have a view and see what i feel.

The Video above is pretty short and unedited, later video's will be like Spielberg directed them himself. So I apologise in advance for the poor quality. But it does give you an overall idea of whats I am trying to describe and blog about. Any comments gratefully received, Any comments like 'Freak', 'weirdo' will be laughed at, I have indeed grown a immunity to any comments like that.
I would like to hear from any other Dystonia / Tick sufferers out there that would like to share and comment on my blog, Please remember I've never blogged before and so as I get used to writing them hopefully the more professional they will become.

All the Best

The Dystonia Society