So I've been pondering this whole "dystonia daughter" title to my blog and this has stirred up so many emotions. This all started by my dad being diagnosed with Dystonia in 2008. That diagnosis changed about a year ago and switched his diagnosis to an even more rare neuro disorder. This change in diagnosis began a dialogue among myself and so many others that I passionately care for and love of "Why are you still interested in Dystonia when you dad no longer has it?" -mercy..... what a great question!
What, though, does he have that everyone else in the "Dystonia boat" or any other rare disorder/neurological disorder boat can relate to? What does every one of these people and disorders have in common? The answer is that they are ALL people that are braver than I in some ways and are living each day in search of an easier way and an easier day. To suffer and struggle to move and to do 'simple, every day' tasks is a battle that millions of people suffer with each day!
What else these people that struggle with Dystonia and other disorders is passion and hope! The hope that comes from hearing about new research being done to find a cure, the hope that comes from the federal government dedicating funds from the NIH to expert research, and the hope that comes from having friends and family that stand alongside them to walk this road that they are on is a hope we all should strive to find. This hope is what gets them through the tough days. These friends and family are the ones that sit in the floor and cry with them, rejoice with them when they reach a medical milestone, and that advocate for them on Capital Hill when their bodies won't allow them the opportunity to travel and talk with their congressmen/women themselves.
When it really boils down to it, dystonia and my dad have everything in common but a diagnosis and treatment. Everything else is left unchanged! From the difficulties to do every day tasks to the beautiful friendships and relationships formed along the way, things remain unchanged for dad. Stay strong, remember, that you are not alone, and keep fighting the good fight!
"Alone we can accomplish many great things. Together we can change the world!" -Estafania Guadalupe Estrada