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
Paul

The Dystonia Society




7 comments:

  1. Really interesting read - I am so used to this in my family that I dont think I see it any more, but reading this, and watching the video rather than just sitting with you, I see it maybe as some other people see it. I still accept it as part of you, but see how much you hate it. I am glad you started to blog about it, its not a secret, nothing to hide, and exploring it can be a good thing.

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  2. Hey Paul, Thrilled to see you're blogging, a wonderful way to support others affected with Dystonia and spread understanding of our little known neurological disorder. Just want you to know I posted a link to your blog on the sidebar of my blog - Chronicles Of A Dystonia Muse: http://dystoniamuse.com - look under "Dystonia BloggerMania. Chronicles Of A Dystonia Muse is my humorous twist on life with Dystonia, 40 years with this condition and still kicking! I've found that blogging about Dystonia has been quite a journey. I've met amazing people and gained so many insights, not just from people with Dystonia but a variety of chronic conditions. Best of luck with your site. -Pamela-

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  3. Dear Paul,
    yes, it is nasty disfunction. I only have it in my left side neck. It was diagnosed after long investigations trough my own dokter, who finally sent me to an old neurosurgeon, who only asked me to close my eyes and point my finger to my nose. It ended somewhere on my ear. That was when I was thirty. I went to the Groningen Academic Hospital, where they helped me with rivotril and a betablocker. I think I was one of the first to undergo the botox treatment. As a science journalist I understood the disfunction. I even visited the laboratory in Gottingen where the botox treatment was invented. despite of the dystonia I have been functioning reasonably well. Of course public appearances could be awkward, as I said yes and my head said no. And my breeding was so nervous i` could hardly speak. Nevertheless I managed to stay in my job until recently. As my daily reorganised and they wanted to give another job I found out I was tired. Now I have been unemployed for half a year and everything is going great. Somehow the dystonia is less virulent, so the daly stress does effect the dystonia. Anyway, as I understand it is not a life shortening disease and now I try to go trough my days writing a blog. Not about dystonia, but about everydayness. Commenting about crazy world and literature. So I managed and got the dystonia to hinder me as less as possible. I hope this is something for all the dystionia-sufferers to get hope from, at least if they have it in a minor form as I have.
    I wish you all the luck, sometimes you need it.

    ReplyDelete
  4. Since September is Dystonia Awareness Month I want to make everyone aware of the program I have been successfully utilizing for over 4 years to help hundreds of dystonia sufferers, all over of the world, improve the quality of their lives. To read their inspiring stories go to www.dystoniahealthadvocate.com. I would greatly appreciate you sharing this valuable information during Dystonia Awareness Month.

    ReplyDelete
  5. Since September is Dystonia Awareness Month I want to make everyone aware of the program I have been successfully utilizing for over 4 years to help hundreds of dystonia sufferers, all over of the world, improve the quality of their lives. To read their inspiring stories go to www.dystoniahealthadvocate.com. I would greatly appreciate you sharing this valuable information during Dystonia Awareness Month.

    ReplyDelete
  6. Since September is Dystonia Awareness Month I want to make everyone aware of the program I have been successfully utilizing for over 4 years to help hundreds of dystonia sufferers, all over of the world, improve the quality of their lives. To read their inspiring stories go to www.dystoniahealthadvocate.com. I would greatly appreciate you sharing this valuable information during Dystonia Awareness Month.

    ReplyDelete
  7. Since September is Dystonia Awareness Month I want to make everyone aware of the program I have been successfully utilizing for over 4 years to help hundreds of dystonia sufferers, all over of the world, improve the quality of their lives. To read their inspiring stories go to www.dystoniahealthadvocate.com. I would greatly appreciate you sharing this valuable information during Dystonia Awareness Month.

    ReplyDelete