So much has happened

Well as you know with medical diagnosis, things happen as slow as Christmas or happen so fast you are left with your head spinning and trying relentlessly to stay caught up. Well, we have had so many things happen so quickly and we are pleased with them all. The Baclofen pump trial injection did not go as we hoped or expected and we have since re-visited that and will be doing that again with a real clear understanding of all individuals involved of what to expect. Also, we have since been able to see dad's neurologist and he is well pleased with moving forward with trying the Baclofen pump again. A few weeks ago, i was able to return to my home in Pennsylvania and leave mom and dad in a wonderful place to be able to begin their new 'normal'. They have since made a trip (3 1/2 hours one way) to Birmingham on their own and it was incredibly successful. They were able to figure out how to pack the car, travel that far, get out and stretch and do all of those things on their own. I knew they could do it, but i think their confidence was a little shaky before - but now it is great confidence in their own abilities.

In other news.... lol.... we have had a friend secure a spot in the ING NY Marathon to run on behalf of the Dystonia Medical Research Foundation in honor of my dad and all others who can't run! Her name is Jen Devore and the NY Marathon requires each individual running on behalf of a foundation to raise $2500 dollars for that charity. Please consider making a donation to this incredible feat for Jen to do for people she doesn't even know! Here is the website:

http://www.crowdrise.com/dmrfoundationnyc2013/fundraiser/jendevore/

Fun info and look for updates soon about the marathon. Until then, keep your head up, press on toward the goal, and always be your own best advocate! Spread the word about Dystonia every day to someone and let's win the battle against lack of knowledge or education about what Dystonia is!

sometimes we have to find our voice

There are those people that you always hear that have 'lost' their "Advocate voice" and we always tell ourselves, that we will never lose that and be that person. Sometimes, though, the exhaustion of doctor after doctor, opinion after opinion, failed treatment after failed treatment, the day comes when we realize that, we, too, have lost our "advocate voice."

Then what..... where do you go to find it.... where did you leave it..... and just exactly when did you lose it?

Well, this is where we have found ourselves.... and we have lost and have just re-found our voice. Sometimes things happen that you just know in your gut to be unfair, incorrect, or anything else and you just dig in your heels and find that fight that you lost! Well, there have been some things that have happened lately and we have come face to face with some difficult decisions to make and we are now digging our heels in! This week we will dig in, use our voice, and remember, that we are our best advocate for ourselves!

If you have lost your voice, ask someone to help you find it! Dig in, fight the good fight, and be your best advocate! Whether it is in regard to a different medication, to DBS, or even fighting an insurance company, dig in and persevere!