I’m so happy to find you.
I was diagnosed in February of 2020. I was depressed about my diagnosis and also excited about how much I could do after taking carbadopa/levadopa. I’d spent most of 2019 in bed and only had 5-7 days a month that I could function.
My dystonia mostly effects my neck, shoulders and face and I was first diagnosed with chronic migraines. When it started causing spasms that made my right side of my body move uncontrollably, I finally understood what was happening. My mom was diagnosed with adult onset dopa responsive dystonia in her 40’s and this is what it looked like. I did not want this disease and feared it for over 20 years. It was traumatizing and scary. I felt hopeless.
I made an appointment with my neurologist and he put me on carbadopa/levadopa. Getting used to the side effects sucked but I could move my head further than I had in years without it triggering a migraine. I started thinking about taking on other problems like my PTSD and being able to do more as a parent for my teenage kids. I was feeling hopeful, it was March of 2020. Covid hit and the world stopped right when I was ready to embrace it again. Dealing with this pandemic while trying to come to terms with my diagnosis has been so isolating and discouraging. Finding this group feels like I’m not alone. Thank you for being here.
#DopaResponsiveDystonia