So in this whole journey, I have decided that there are a few things that REALLY irritate me and I plan on helping see these two specific things to fruition - so stay tuned for the latest info on the progress made!
The first thing that really upsets me is that Dystonia is a quite common neurological disorder in the USA, is not recognized in any Microsoft program, software, etc. as being a word. Every time the word Dystonia is typed, the red squiggly line comes up under it and auto-correct tries to make it "Estonia" which is a state in Northern Europe!!!!! I mean, REALLY PEOPLE!?!? I am often asked, "Why don't you just add it to your dictionary" and the answer is simple - I shouldn't have to! Parkinson's Disease is recognized, Epilepsy is recognized, etc. So who does one write a letter to, get a petition signed for, and call and inquire about this being added? I'm not sure, but as soon as I find out, I will let you know!
Also, the other thing that I have found to be incredibly discouraging and sad is that Dystonia is not on the list in the USA for early Medicare. If you or a family member has Dystonia, you know and understand the EXTREME financial burden that quickly becomes one of your top concerns! This is something that we are blessed to have only heard stories of, that we are fortunate enough to have been able to avoid, but for most of the others, they are not so lucky. I have heard stories from everything from taking out second mortgages, bankruptcy, and even forgoing treatment and medication because they could not afford it. This is something that must be addressed. This is something that takes time. The Dystonia Medical Research Foundation, per some conversations I have had with the great people at the foundation, have started this process.
But these are things that we shouldn't allow to be in the first place. We should take every opportunity to make sure that everyone understands and knows what Dystonia is. We should remember that because we or someone we love suffers from this disorder that seems like nobody knows about, that it does not mean we are alone! There are many others who suffer from this. There are many others that understand the frustrations that come when the red squiggly line appears under the word "Dystonia" while you are typing. There are people who are in the middle of a financial strain from the results of living with Dystonia, that totally understand your financial struggles! We are all out there - together - in a great big world that on some days, seems very small when you find someone who says two of the most comforting words on the planet - "Me, too!"
Be the "Me, too!" to someone. Share Dystonia, and be on the look out for what is new on the front of these two items that I've shared about. Until then - Make a difference and Go Blue!
Tuesday, May 21, 2013
Sunday, May 5, 2013
1 week down, many to go
Well, I've been here a week now and have realized even more how much I HATE Dystonia! This is not one of those moments where I say it and someone tells me, "It can't be that bad that you HATE it." I mean - i REALLY HATE IT! My dad, who is a smart, capable, and willing man, has been temporarily defeated by Dystonia.
NOW, I say temporary, because we are fighting this war and are CONFIDENT that we will defeat it! No, we will probably not cure Dystonia in my dad's lifetime, but we will surely be able to subdue the effects of it as much as possible. Dad's storm looks like it has passed and now the task to build his strength up so that he can regain the mobility he had 3 weeks ago has begun. A physical therapist came in Friday to help dad strengthen his upper body as well as begin stretching his legs and back and will continue to come out twice a week until we, hopefully, don't need her! My mom has finally gotten some sleep and is aiming to go back to work soon. We are trying to get their 'normal' life back, and claim victory in this small battle that is a bigger part of the Dystonia war!
Another thing that has happened this week is that along with the help of a beautiful girl in England, Rebecca Moller, we created a "Go Blue" event on Facebook. We have had pictures start rolling in of people that have gone blue in their own way and encourage you to do the same!
This is Dystonia Awareness Week and yet our advocacy should not stop here. Last week many of you were in DC pressing the importance of advocacy and funding on Capital Hill, and yet our advocacy should not stop there, either. Dystonia is the 3rd most common neurological disorder (in the USA) and if you talk around enough, you will run into people that absolutely know what it is. BUT at the same time, there are many people that don't know what it is and need the knowledge so that they can, too, become and advocate and one day help someone else!
Go Blue, advocate, write letters to your representatives, share your story, tell someone else, or anything you can - but most of all - SPREAD DYSTONIA AWARENESS!!!
NOW, I say temporary, because we are fighting this war and are CONFIDENT that we will defeat it! No, we will probably not cure Dystonia in my dad's lifetime, but we will surely be able to subdue the effects of it as much as possible. Dad's storm looks like it has passed and now the task to build his strength up so that he can regain the mobility he had 3 weeks ago has begun. A physical therapist came in Friday to help dad strengthen his upper body as well as begin stretching his legs and back and will continue to come out twice a week until we, hopefully, don't need her! My mom has finally gotten some sleep and is aiming to go back to work soon. We are trying to get their 'normal' life back, and claim victory in this small battle that is a bigger part of the Dystonia war!
Another thing that has happened this week is that along with the help of a beautiful girl in England, Rebecca Moller, we created a "Go Blue" event on Facebook. We have had pictures start rolling in of people that have gone blue in their own way and encourage you to do the same!
This is Dystonia Awareness Week and yet our advocacy should not stop here. Last week many of you were in DC pressing the importance of advocacy and funding on Capital Hill, and yet our advocacy should not stop there, either. Dystonia is the 3rd most common neurological disorder (in the USA) and if you talk around enough, you will run into people that absolutely know what it is. BUT at the same time, there are many people that don't know what it is and need the knowledge so that they can, too, become and advocate and one day help someone else!
Go Blue, advocate, write letters to your representatives, share your story, tell someone else, or anything you can - but most of all - SPREAD DYSTONIA AWARENESS!!!
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