Tuesday, October 4, 2011

Tonic for the Dystonic

I was flipping through the Daily Universe yesterday morning and I'm glad I did, because as I was, I saw this picture

What I noticed was the word, "Dystonic."  I immediately looked up at the title and read, "Students' nonprofit raises awareness about dystonia."

The girl in the picture, Aubrey Hedlund, is a good friend of mine.  She and I have a special connection: dystonia.

I met Aubrey my first semester back from my mission--she was in my ward and we quickly bonded over the disorder that both she and my dad share.  I don't really remember how we made the connection, but I'm pretty sure that it was through her then boyfriend, now husband, Dan.  Read her story here.

Dystonia, simply put, is a neurological disorder that is more or less like a mixture between Parkinson's and Multiple Sclerosis.  It can affect focused parts of the body or the entire body in general.

The one that my dad has is called Generalized Paroxysmal Dystonia--the kind that affects the entire body.  I grew up seeing him suffer through countless seizures, struggle to form simple words and connect thoughts, and have the hardest time what he said 5 minutes earlier.

My dad and my family a couple years after the accident.
His story started out around the age of 29.  I was 5 years old and my dad took me with him on a business trip to San Francisco.  It was one of the best trips ever... he wanted to make sure I rode every form of transportation possible, I learned left from right while sitting at a black and white checked table in the Hyatt Regency, San Francisco, and we jumped on the bed while sword fighting with the knight's armor I got from FAO Schwarz.  Anyway, we flew back late at night; I had fallen asleep and my dad carried me off the plane when we landed.  We were one of the first ones off and as he began down the stairs, he heard the person behind him yell, "Watch out!"  The stair was loose and he tumbled down the stairs, cocooning himself around me.  I came out without a scratch, but the for him, the fall was the trigger for a  neurological disorder we now know is dystonia.

It took doctors years to diagnose what was wrong.  Many of them said he was crazy and that the pain was all in his head.  My mom and he spent countless hours in hospitals and finally a diagnosis was made.  It progressively got worse and by the time I was in 6th grade, he had to stop working all together.  I am so thankful that my mom has an education and a career that allows her to provide for my family.

What's awesome is that Provo now has a Dystonia Awareness group.  It seems like it's relatively small right now, but I pray that it will grow because it's an organization with great purpose and one that hits home. 

Anyway, PLEASE go to the organization's blog, learn more about dystonia, and follow and donate to the cause!


1 comment:

  1. Thanks for sharing your story. My dad has Parkinson's. It's really neat that Provo has some awareness groups. I think that is so important.