So some of you know and some of you don't yet, that my husband and I have dyed a lock of our hair blue in honor of my dad and his upcoming DBS as well as for all of those who suffer in silence about Dystonia. It is my intention, goal, and prayer, that through this simple act, I will be able to share what Dystonia is and hopefully plant a seed in someone else that will grow into a tree of knowledge that they can share with someone else and make a difference. Well who knew that this would turn into something beyond just a personal 'mission' of ours!?!?
I just recently moved to Pennsylvania from Alabama and have made many new friends but one of them stands out more than the rest! Her name is Karen and she has Dystonia! Karen, also, has an incredible sister named Kim, who does not have Dystonia, but together, they battle this disease for Karen. Well, when I dyed my hair blue, Kim thought that she knew a way that she could do more and she contacted the local newspaper! She not only contacted the local newspaper but she kept on insisting that they run a copy of my blog that explained my blue hair and Dystonia until she got a phone call. The phone call is where we were all beyond thrilled with her persistence and it paid off!!!
They were not considering running the blog but were considering and wanting to do an article for the Health section of the newspaper about Dystonia, and feature her sister and myself!
WOW!!!!! GO BLUE!!!!! Dystonia is a disorder that must be taken seriously and must be talked about and shared by us, because if not, who will? Well, next Thursday, Karen, Kim, and I am going to be interviewed and photographed for an article about Dystonia. Won't it be amazing at just how many more people will be informed and how awareness will spread by this? I am so excited and can't believe that my own personal mission of having people ask me "Why Blue" about my hair has turned into something much more!
Awesome...... just awesome!!!
For those of you who have not read my blog about "Why Blue" or the follow up blog "DBS, Here we come", please click the links and read them and share them with others!
Friday, March 29, 2013
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!!!
Rebecca
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!!!
Rebecca
Thursday, March 21, 2013
A new start
Well, I have so much to say on the topic of Dystonia, I have decided to create my own Dystonia blog to seperate it from my personal blog. I hope that you all join along for the ride and enjoy my comments as I discuss and ponder the disorder of Dystonia through the perspective of a daughter. I do not have Dystonia, myself, but my father does, and so I have taken this cause upon myself to further inform others about it and to advocate for those that have grown dear to my heart in this journey!
So journey along as I take on the cause of Dystonia Advocacy and enjoy all the laughter that is sure to follow me wherever I go!!!
**View my past few blogs about Dystonia and my Go Blue campaign here:
~ http://tonyandrebecca.blogspot.com/2013/02/why-blue.html
~ http://tonyandrebecca.blogspot.com/2013/03/dbs-here-we-come.html
So journey along as I take on the cause of Dystonia Advocacy and enjoy all the laughter that is sure to follow me wherever I go!!!
**View my past few blogs about Dystonia and my Go Blue campaign here:
~ http://tonyandrebecca.blogspot.com/2013/02/why-blue.html
~ http://tonyandrebecca.blogspot.com/2013/03/dbs-here-we-come.html
Subscribe to:
Posts (Atom)