Thursday, July 30, 2015

feeling like i'm looking in from the outside

So in the time since November of 2008 that my dad was diagnosed with Dystonia, I have never felt like an outsider in this journey called "life" with other Dystonia patients or families. Now, though, I'm feeling that pressure.

In a crazy and dramatic turn of events, my dad was re-diagnosed with another neurological disorder. This re-diagnosis has changed everything: treatment, doctors, nurses, daily routine, as well as all of our outlooks on life. My attitude toward the medical community has shifted as well as my trust in an initial diagnosis, no matter how straightforward the diagnosis might be.

You can imagine, now, I am thinking about so many things from so many different directions now, gathering my thoughts for a blog post on "Dystonia Daughter" is a little conflicting now. What do I write about? Where do I allow my thoughts to take me? What do I say to well represent those with Dystonia, but to also represent those plagued with other even more unknown disorders than Dystonia? All of these are questions I plan on continually churning in my head but for now, I will share what is going on in my life that has a HUGE impact on the Dystonia community.

The past two Novembers, the DMRF has been lucky enough to have been able to secure slots in the prestigious NYC Marathon that are able to then be used by our organization as a fundraiser. We have had incredible success with this over the past two years and this year, we are glad to say that we have, again, secured slots in the marathon. I am proud to say that 10 (ten!!!) of the 12 runners for the DMRF in the NYC Marathon this year are from the Williamsport, PA area and are people that I call personal friends! These ten individuals are made up of people that had never heard of dystonia before they were asked to run and of people that have run the marathon for us in the past. These ten individuals are a group of friends and acquaintances that decided that they wanted to do this as a team and to help our foundation. We are committed to raising $25,000 as a team and are in the process of securing as much funding as we possibly can from their friends and family. Though this seems like such a difficult task, we are thrilled about it!

Isn't that so cool!?!? I am honored by these ten runners that are all running for an organization that has directed and cared for my family since 2008. There is a married couple in our team, my husband, a couple of DMRF NYC Marathon repeat runners, one that had never heard of dystonia before this opportunity and now has had a family member diagnosed since she committed to running, and each and every person on this team is 100% committed and 1,000% amazing! My heart is with each of them and we are on the journey to begin raising these monies! If you want to help, contact me!!!

Until next time and I can put words to my feelings, this will be it for now!
Continue to allow Dystonia to direct your movements, but not rule your life. And continue to share with all who will listen what Dystonia is as it changes lives - even the lives of those who don't have Dystonia!


1 comment:

  1. Rebecca, we're happy that your father's revised diagnosis has improved his quality of life and we're thrilled that you're still a part of our dustonia community.