Sunday, March 24, 2013

where to begin...

Well, as I now ponder what to write about and where to even begin in this blog, I think to myself, "the beginning is usually the best place to start," and so there we will begin.

The journey of becoming a daughter of a Dystonia patient began for me back in approximately the beginning of 2006 - or somewhere in there. I had just gotten married and traveled back to visit my parents one weekend with my husband and we went for a golf outing with my dad. Well, that evening, my dad complained terribly about his hip being very 'tight' and even wondering if he had pulled a muscle in his leg. The next day, dad found it very difficult to walk. Well, time passed a little and I don't remember all the dates and time frames - I'm sure my parents or brother could remember a little better that me (I was a newly-wed, remember!?!?) - but the next vivid memory of mine was a trip back to see my parents and my brother and dad were putting a new tarp over dad's boat and they both came in nervously chuckling, but laughing none the less, about how dad had fallen and how weird it was! My brother said they were just standing there and all of a sudden dad went down like a falling tree - his entire body went stiff! Well, time continued to pass and the 'muscle cramps' got worse, his foot seemed to never not be cramped up, he even had a hard time getting shoes on because his foot was so cramped up. They did all the vitamin regimens, etc. and it just seemed weirder and weirder and then my dad got where he really needed a can for some stability to get around - his foot seemed to just 'give out' on him often! Well, in this time, many trips to dads family doctor seemed to be turning up nothing and he really didn't 'see' anything wrong with him, until the one day that the doctor was there and dad had one of his 'stiffening up and falling like a tree' episodes!

Well, that did it for the family doctor! He knew that something was terribly wrong the way it happened and immediately sent dad to find answers that he could't provide! And so began, as you hear so many other Dystonia patients talk about, the almost 9-month journey of neurologists, orthopedic doctors, chiropractors, and MORE neurologists to finally be diagnosed with a neurological disorder by the name of Dystonia. Our 9-month journey is a short jog down the road compared to some people who go years being mis-diagnosed, un-diagnosed, or just considered 'crazy'.

In our family, the joke is when a doctor tells you 'it's all in your head' - with Dystonia, it is!!! :) I know that there are many out there who have had these journeys that weren't as short as ours in my dad's diagnosis, and we find ourselves blessed to have been on that short end of the time for diagnosis, but those out there who have taken years to be diagnosed, or are still suffering without a diagnosis, it is time to make the #3 Neurological disorder in the nation become a common name!

Won't you help me spread the word about Dystonia!?!? Those of you who have strange symptoms of muscle spasms that are uncontrollable, muscle cramps that never end, or anything in the middle, ask your doctor about Dystonia! Are you one who knows what Dystonia is because it has drastically affected you or someone you love in a way that has changed your life forever? Help educate the general public and the medical profession by sharing a little blurb about your experience in hopes that they will one day recall the information and save someone from going through what you have been through!

Until next time and when I have the opportunity to share with you some fun information from my own personal "go blue" campaign, God bless you and yours and have a great night!!!


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