Wednesday, January 10, 2007

So, what actually causes this Cervical Dystonia?

Don’t you just love it when suddenly, there we are trying to remain sedate, intelligent looking and not too ruffled, the neurologist says something like “you definitely have indication of cervical dystonia blah blah blah.” Like, who cares at that point. It really is SOMETHING. I’m not going MAD. Oh dear God, hold me together or I swear, I’ll jump up and hug this doctor or something! Someone really does know that I haven’t been sleeping funny or been conned by the mattress salesman! Oh my gosh, oh my gosh, oh my gosh. Then, ever so sweetly we hear ourselves say something like, “thank you doctor, I don’t know anything about this cervical dystonia thing. Can you tell me what to expect?” Then notice THAT look on the doctor’s face – like as though he is thinking “for goodness sake! Didn’t I just explain all that?”

Hmm! Well now. There are some great sites with lots of information at www.dystoniaaustralia.org.au and www.asta.asn.au as well as great sites in both the United States of America and the United Kingdom, to name but a few places from where you will be able to source information closer to where you are.

Meanwhile, cervical dystonia is referred to as being either a primary or idiopathic dystonia or alternatively, referred to as a secondary dystonia.

Causal factors for primary or idiopathic dystonia is difficult to identify in the vast majority of people with this neurological condition. Abnormal functioning in a part of the brain known as the basal ganglia is suspected to be a causal factor for dystonia. This area of the brain is where the ability to control our movement originates from. It is thought that an imbalance of dopamine may be responsible for several different kinds of dystonia, including cervical dystonia. Dopamine is a neurotransmitter or more commonly referred to as a chemical messenger. Neurotransmitters influence our muscle movements throughout our body. However, there is a great need for further research leading to a better understanding of exactly what happens in the basal ganglia.

Secondary dystonia refers to the possibility of a person’s dystonia arising from some degree of trauma. These causal factors may be identified as arising from a stroke, having had some trauma to the basal ganglia, acquiring a brain injury, some degree of infection, or even some other disease of the brain. There is evidence indicating some people’s dystonia having been triggered by the use of drugs used to treat psychiatric illnesses and or nausea.

In my case, I have lived in many countries around our world and been subject to many different kinds of illnesses, including tropical diseases. Also, I have experienced extremely stressful situations in relation to employment in third world countries and have also survived life threatening illnesses and many bereavements within my family of origin. The cause of my cervical dystonia and spasmodic dysphonia remains unidentified. However, I am acutely aware that emotional stress and also physical stress are major contributing factors to the deterioration of symptoms with both forms of my dystonia.

Please, do leave a comment. Let me know if there is any further area you would like to read about in the more relaxed ‘blog’ form. Remember, although we are able to support each other through sharing our collective experiences, the best place for us to discuss our treatment needs is with our family doctor in consultation with our treating neurologist. Team work is great. However, any team is only as strong as its weakest link. Together, let’s keep our links strong.

Sue Bayliss. s.j.bayliss@bigpond.com.au

6 comments:

Maria said...

Sue, I wanted to let you and the readers of your site know about a film titled "Twisted" which features others who've experienced cervical dystonia. It will be shown on our Public Broadcasting System on Jan. 30, but is also getting screenings throughout the US. I've requested our local library purchase it, but individuals can buy it too. For
more info, go to http://www.blinddogfilms.com/twisted/about.html
Thanks for your valuable info. Maria

Sue Bayliss said...

Maria. Thank you for your great comment. Much appreciated. We will be tracking down the film called "Twister" - TODAY!

Megan Bayliss said...

Mum the film is called "Twisted"! Can just imagine what you'll get if you go to the ABC shop and ask for "Twister"!!!!!

Check out the web site that Maria has noted before you go use your funny voice on sales people. Some poor bugger may think you're sexually harassing them.

And by the way....if physical and emotional stress is correlated with dystonia - there's no hope for me!!!!!!! I'm having the day from hell with your grandson.

Sue Bayliss said...

Ahha. I see your point, Megan. You have such a way with words. However, I am doing very nicely tracking down the film "Twisted", thank you. I know it's not Twister - like my voice, I just can't hit the write keys. So! Stick that in your cake hole and chew it!

I'm sorry to hear Boy is having a bad day with his Home School coordinator. Love you, Mum. XXXX

Yvonne said...

I heard that movie was available but dont know how to access it in Australia.
Sue can you post and let me know if you have success.
I am downloading a trailer to view as we speak.
Your story about diagnosis is so funny and so rings a bell with me.
Keep up the good work
Yvonne

Sue Bayliss said...

Yvonne. Thank you for your comment. Glad you got a laugh. Sometimes it is hard to put into words just how it feels. Also, most of us are reluctant to say it how it is for our own experiences. Laughing is so good for the soul! It is good to be able to laugh about ourselves too. I purchased the DVD 'Twisted' today online using my credit card on the site www.blinddogfilms.com/twisted as Maria posted in her comment. Great stuff. Sue.