Wednesday, December 9, 2009

Dear Diary: Is this Brain disorder affecting my brain?

I'm going to be perfectly frank right now and say the I am fed up.

In the past 9 months that I have been disabled by my dystonia I have met many wonderful people with dystonia. By meet I dont mean the number of people who stumbled on this blog or follow me on twitter, I mean people that I have actually held a conversation with, or read or listened to what they had to say. Some have become good friends, others have just become new additions to my vocabulary, but nonetheless they have shaped my experiences.

What I have learned and experienced is an overwhelming negativity associated with many of the people I have met, watched or read. It has gotten to a point where it actually hurts my heart. For the last couple of months I have been struggling to understand why this is in both my dystonia comrads and myself.

I try not to make this blog too technical, because I am not a health practitioner, but let me break down the definition of dystonia. Dystonia is a disorder of the basal ganglia. It affects movement. It by current definition does not affect personality or cognition. Yet, If you were to lock yourself in a room with 100 people with dystonia the majority of them will either be angry, depressed, or self concious.

Why is this?

The dystonia medical research foundation states that chronic illness frequently affects psychological health:

Is that why we are in love with Micheal J Fox and Lance Armstrong.. because they are immune to the chronic illness blues?

I am not so quick to write off stress as a reason for the sour grapes many seemed to have ingested.

Could the neurons be attacking other brain cells like they attack cognition in Parkinsons? Could some forms of dystonia just naturally make you mean?

I know one thing: Dystonia has made me more outspoken, more aware of the day to day, and more likely to take a siesta or two. When I find myself sucking on the dystonia sour grapes.. well I do like I do with my daughter..

I give my brain a time out.


  1. Sounds to me that you've stomped those grapes into a fine wine instead of a whine.


  2. I find surrounding myself with upbeat people really helps.

  3. I stumbled across your blog somewhere. I really enjoy its up beat nature. I am a dystonia sufferer. PKD with Dystonia. At times in the past I have been frustrated due to not knowing what was wrong with me, but never mean or angry, now I have a diagnosis and the right treatment that frustration as gone.
    I realised I had this form as a child although I didn't know it. So maybe I grew up with it, although its taken a very aggressives turn since then.
    I just work with it-maybe because I am older and have had life challenges before, I do not let this control my life and I find it impossible to develop "sour grapes" but I too have notice a lot of negativity from suffers, and this surely can only make matters worse in trying to get on with living.
    I do have a great deal of sympathy for other suffers, but this blog is refreshing and uplifting for a change from the continual grumping and complaining I have come across from other sites. eg. Forums, discussion sites etc.
    Keep up the good work!

  4. thank you for writing this. I've been diagnosed with dystonia recently, but turns out I've been struggling with it about a decade. weed (it doesn't always calm you which is good, you gotta work with urself, but it makes you view things easier and atleast not be that angry about you being this way) and workouts help me with the negativity the best, negativity also has hurt my heart alot, especially when i started to view myself as a bad person because of it. i tried to condition myself to live sober quite hard, ofcourse it only made the condition worse, i couldnt understand why. i've yet to learn and forgive myself. i try not to take medications, because i've found pills to wreck my body way more than aforementioned things, and that in no way helps in being less stressed and stuff (in the long run)


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