Friday, March 29, 2013

Go Blue is making a new mark!

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!


  1. Hi Rebecca,

    Thank you for your blog and for spreading awareness about dystonia. I just subscribed.

    I don't personally have dystonia, but when it affects a family member, it affects the entire family. My daughter, Joanna, who lives witn my wife and me and will be 41 this summer, was diagnosed twenty years ago.

    Please tell your father not to expect a miracle cure if he chooses to undergo DBS surgery. Joanna had it nine years ago. It has helped, but she's still very disabled. We see the miracle cures on TV, but I know many people like Joanna who only receive some improvement.

    DBS works best for patients who have the DYT-1 gene. Joanna doesn't. Scientists still haven't even discovered the gene that affects her. She has had visible lessening of some symptoms, but many remain. Your father could expect the best results if he's DYT-1.

    Many neuorosurgeons now perform DBS surgery. I know patients who have had to have second surgeries to have the leads in their brains moved to a better location. Please make sure that your father has his surgery performed by a doctor with a lot of experience performing DBS on dystonia patients.

    Keep spreading awareness and promoting the Dystonia Medical Research Foundation. Your work will bring us closer to finding the cure. thanks for all that you're doing.

    Be well.

    One person can make a difference.

    Len Nachbar, Leader
    Central Jersey Dystonia Support and Action Group

  2. Rebecca, That is just fabulous! We really never know where our actions will lead. I'm sure you make such a difference in your dad's life and now here you are raising awareness for all of us with Dystonia. I wish your dad the best of luck with his DBS. -Pamela aka Dystonia Muse-

  3. My son Alex had DBS last year at 14, he has suffered from Dystonia since he was 6. He just had both feet & ankles cerrected. He should be walking as soon as summer. He ended up in wheelchair by the end of kindergarten. DBS has been just amazing, all respond different but my sons has been a dream come true for all.
    He had lost almost 95% motor control. They are just going to begin programing, all his just happened from turning DBS on. He was thee youngest to have it done, so they think this is why the dramatic response.

    Good luck, This Dystonia has been an amazing journey.

  4. I really liked your way of awareness about dystonia!
    See my last blog post: