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Dystance4dystonia update

 


It took me 22 years to get diagnosed with dystonia. 22 years of unexplained pain, several unnecessary surgeries and a whole lot of unknowns. The first time I heard the word “dystonia” I had no idea what it meant and spent days researching it to understand it better.  I wished I had known more about it at the time but it took years to fully understand what was happening to my body.

It seemed like it progressed fairly quickly. It started in my shoulders I guess but we didn’t know what it was until my hand curled in. It then moved to my foot and neck and then to my right side.  After going through DBS, medications and Botox injections I started to improve. As I got better, all I wanted to do was help other people understand it. 

Since 2012, I have had 4 dystonia walks to spread awareness and raise money for the DMRF. I have had great support and have met many people. Last year, we had to cancel the walk because of the pandemic and it looks like we will have to cancel again this year. I can’t just skip it again so I’m looking for ways to still be active, spread awareness and raise money for research to find a cure. I am in the process of planning something with the DMRF and can’t wait to share what I’ll be doing this year! 

Thank you all for your support, keep sharing my blog to help me raise awareness! 

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