Dystonia and other movement issues on Oprah tomorrow

So although it is not a secret, many of you have little or no idea that I have a neurological condition.  I “suffer” from both a non-stop tremor in my left hand and that hand also has a dystonia.  You don’t know about this not because I am ashamed or maxed out on drugs but because it doesn’t define me, personally or professionally. 

This started 9 years ago this month.  In April of 2000 my left pinky started twitching, then within just a few weeks it was a full on tremor.  Only my left hand.  I have been poked and prodded by doctors from all across the country.  I am a national research project.  My blood has been cloned for research.  No one can name what I have or say why I have it.  I have a collection of symptoms that don’t fit any mold.  I was actually told for a few years that I had young onset Parkinson’s.  Talk about scary.

Since this adventure started I have been busy.  Raising my family.  Meeting and marrying an incredible man.  Getting my Bachelor’s degree.  Almost done with my Master’s now.  Three books out last year.  One in the works for this year.  All those things, and still managing my condition.  It doesn’t hold me back.

Sometimes it slows me down.  I have learned to control my stress above all other things.  This is by far the biggest influence on my symptoms.  When stress is high (or I let it get out of hand) my hand will simply lock shut.  How’s that for a sign to slow down?  Oh, like I said it’s my left hand and I am left-handed.  Sometimes it’s for an hour.  Been as long as a few days of a locked hand.  Not cool.

All of this to get here, watch Oprah tomorrow.  Hear the stories of those affected by things like this.  I am so blessed that my symptoms are as mild as they are compared to some of the people with similar battles.  I am so blessed to have a supportive family that helps make sure my stress is in check.

Become motivated by these folks, see what they overcome and how they refuse to be brought down by a condition they happen to have.  Maybe you will be inspired to support stem cell research or other means of research to combat these issues.  Maybe you know someone and can point them toward a support system.

Phew.

 

Dr. Oz and Michael J. Fox - Oprah.com

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Comments

Donna

I've been keeping a blog about my own journey with Dystonia. You seem to be a very driven person. I just received my bachelors in psychology on June 16, after 9 years of going to school part time. I didn't let my Dystonia stop me!

I wish you the best.

My blog is www.dystoniadiaries.blogspot.com

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