I've learned so much about myself this past week, while I came off of my l-dopa. Yes, you read that correctly... I came off my miracle drug.
Back when I thought I had Cerebral Palsy (CP), I rarely let anyone video tape me. Not many people like to be recorded and with my physical abnormality, I'd avoid being recorded at all costs! That means I have very little documentation to show how difficult my walking really was. When I took l-dopa for the first time, I had no idea that it would be so life changing. I know that there are other people out there who are misdiagnosed with CP, like I was for three decades. If my story helps one person, it will be worth it.
I stated at the beginning of this post, I learned a lot about myself while coming off the medication. First, I never realized what a strong woman I was. Honestly, I'm not sure how I stayed so positive with muscles twisting in every direction, pain and the struggle to get from A to B. It's only been four years since my DRD diagnosis, but I had forgotten how my body would go into full spasm when there was a loud sound or if someone bumped me as they passed by. Life with this debilitating disease is NOT easy when you're not medicated correctly. I also learned that it's okay to take some time for myself. Because I was so limited this past week, I spent a lot of time watching television, reading and just playing on the floor with my boy. These past couple years I have been so busy making up for lost time, that I forgot what it's like to just sit. Sure, it gets boring after a week, but once in awhile would be a welcomed treat for me.
Anyway, I'm back and will begin sharing my video diary of me coming off my medication (as well as coming back on it) next week!
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!