It has been a long week. I have thought of writing every day, but after work I turn into a pensioner and all I want to do is sleep…..but this won’t be forever.
So, we know a little bit about spasmodic dystonia however, I think it is important to recognise there is other forms of dystonia too
Who would have thought. Certainly not me.
So many different forms of dystonia that people live with every day. This diagram is a simple explanation of what it is and how it effects people.
The question I wanted answered is how common is it. According to the latest figures dystonia is the third most common movement disorder behind essential tremour (uncontrollable shaking) and Parkinson’s disease. This effects approximately 250,000 people in America. That is Parkinson’s disease, not SD.
According to the National Spasmodic Dystonia Society, dystonia effects around 50,000 people in America and 70,000 in the United Kingdom. However, that is all dystonia types. So there is the difference. Simply put SD it is far less common.
That is very annoying. Trust me to get something so obscure hardly any doctors know what it is and no one ever speaks about it. It’s not like getting something ‘normal’ that everyone has heard of. And that is where the problem is, and why it took so long before I was diagnosed.
They have figured out that the problem comes from the brain. I am so annoyed with my basal ganglia for not working properly. It’s not like I can turn my brain off and re-boot it like a computer. If I could believe me I would.
So what does the basal ganglia do anyway……..lets have a quick look.
The pink bit in the middle is the culprit. This is basically a cluster of nerve cells that are involved in selecting muscles for movement. In dystonia the basal ganglia fails to trigger the right balance of muscle selection. The cortex (another part of the brain) sends messages to the basal ganglia in order for movement to be executed smoothly and successfully. Except mine doesn’t
I won’t go into the complex neurological side of things (mainly because I don’t know it)
I can however tell you, that your basal ganglia is associated with a variety of functions including: control of voluntary motor movements, routine behaviours or ‘habits’. These habits include; teeth grinding, (which I do) eye movement, (which we all do), cognition and emotions.
It is interesting that our habits ( there’s that word again) are linked in to the basal ganglia as shown in the diagram………so is this my fault? Did I somehow develop bad habits and change the mechanism of my brain!………..mmmm…… I will have to think about that one.
Emotions…..ah yes, remember when I mentioned that SD can be caused by traumatic life events? So, maybe it’s not my fault after all. How on earth can trauma affect your brain, so your cortex and its buddy the basal ganglia decide not to send signals to my vocal cords (which are muscles by the way). If you already knew that, I apologise.
This is the frustrating part for me because nobody can fix my brain. I can’t take it to the brain shop and send it off to be fixed like a computer (which I think is equally complex). I would pay anything to have my brain sent off to be fixed and put back in my head.
Another question I had when I was diagnosed; is the brain the problem or the vocal cords? Well I think we’ve established it’s the brain and the consequences of that is I, who have always enjoyed a good chat, now have to pick and chose when and with whom I chat with.
Those of you who know me well will understand how this would frustrate me. Those of you who don’t know me, may pity me. I am now the woman of many voices.
That is a different part of my story. I will tell you more of that later.