Day 1 - Dystonia Awareness Month

Happy Labor Day and Happy Dystonia Awareness Month!! I hope your day has been great. Mine's been spent doing paperwork at home - oh joy :) but, it has to be done. The funny thing is, I started this "paperwork" (basically just organizing all my monthly bills and receipts) because I was looking for a particular receipt - 7 hours later all my paperwork is organized and neat, but the receipt still remains to be found - oh well!! I also spent the day trying to figure out how I would start this blog challenge (that I brought on myself!) to raise awareness for dystonia. And just like that elusive receipt I was searching for, I haven't come up with a brilliant idea of how to start. I know most (if not all of you) have read my Facebook blog posts that started the same time my symptoms started and then went all the way through me finally getting a diagnosis, so I don't want to bore you with all of that again! If you didn't happen to see those and really, really want to know EVERYTHING, I transitioned those posts to this blog and they are the second blog posting. But I'll warn you, it's LONG :)

I decided that I will, however, give a brief introduction to dystonia by giving its definition.

First and foremost:



Dystonia, as defined by the National Institute of Neurological Disorders, "is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurological features. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for the majority of cases is not known."

Dystonia is classified as a movement disorder. Other movement disorders include Parkinson's, Huntington's, essential tremor and others. Believe me - when I started having symptoms, I thought I had every one of the catastrophic diseases. But, nope, it turns out, I have the one that no one's ever heard of - including myself! It took 5 long years to figure it out, but I did eventually get an answer. It wasn't the answer I was hoping for, but it was an answer. I was hoping for the "quick" cure: give me a pill, do surgery - whatever, but I wanted it fixed. It was around this time that I also learned I am a VERY and I mean VERY impatient person.

I have adult-onset hemi-dystonia. This means that I was over 21 when I was diagnosed (I started having symptoms at 25 and was diagnosed just before my 30th birthday). And hemi means it affects one side of my body (my left). Although it's most evident in my leg and foot, it's also present in my arm and hand. I started off constantly tripping and very rarely being able to catch myself before falling. It progressed and I started having to use a cane to get around. It progressed even further and now I have to use a walker about 90% of the time. I'm just hoping it doesn't progress anymore! Thankfully, it has not!

That's a quick summary of my initiation into the world of dystonia. I promise to be more entertaining in upcoming posts. I just wanted to start off basically with what dystonia is and my life with it. I will say, while it has caused a lot of tears to be shed, I don't spend my days crying my eyes out (as I once thought I would!) I have learned to live with it - not always gracefully and not always with a smile on my face, but it's life now and I can say truthfully that I live a very blessed life!