Thursday, August 29, 2013

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:

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!

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