Dear Dopa Responsive Dystonia:
Why are you so difficult to diagnose? Why do all of your symptoms mimmic Cerebral Palsy? Why do few doctors know what you are, yet your so easy to treat? Why did you challenge my everyday living for 33 years, when a little pill could ease all my pain and make it possible for me to enjoy every day activities? Why did you think you could take over my life? You must not have known how strong of a person I really am, because I rarely let you get the best of me.
I hate to tell you this, DRD, but I won! Even though I went untreated for three decades, I was able to make friends, go away to college, marry and have children despite the fact that I could barely move my arms or legs to due to the countless hours of spasms, stiffness and cramping through out my body. Not only did you not stop me, but I was able to maintain a positive attitude and be a joyful person throughout this whole ordeal.
I’m glad you chose me to live so many years with a diagnosis of Cerebral Palsy, because I’m able to share my story with the world and because of YOU, I’m helping people, both young and old. My past and current experiences create awareness for parents who are now able to appreciate all the mundane tasks simply, because they know that I’m grateful for all I can do independently. I LOVE that I can now put clean sheets on a bed, decorate my kids birthday cakes, cook meals every night and drive my children to all their activities. Yes, it keeps me busy and can be stressful at times, but because of YOU and my “miracle drug”, I can do it all with a smile plastered across my face.
Dopa Responsive Dystonia, you may have tried to steal happiness from my life, but what you have really done is helped me realize how wonderful the gift of mobility really is. And for that, I thank you!
Check out this posting on the Mighty along with others:
After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!