Tuesday, May 21, 2013

a couple of things....

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!


  1. Thank you for sharing a few of the dystonia issues.
    Dystonia is a 30 year fan of my sons body.
    Strange thing is we never signed up to play the game.
    Please email him for a great friend in me to.

  2. I hope my comment goes through this time. this is my 3rd try. Me too. Yes, those are comforting words. Let's keep fighting the awareness fight! My 23 year old son has special needs and Dystonia. Blessings to you!
    Dayna Camp

    http://gracetodayblog.com (mostly special needs posts)

  3. My 16 year old daughter has generalized dystonia. I appreciate your blog and wish your father all the best. My daughter has had great success with DBS. Feel free to read her blog at emilybethsjourney.blogspot.com. We are continuing to spreac awarness about Dystonia and appreciate that you are as well! Thank you for all you do!
    Marci Goldstein