I realize that I have been posting more about our hiking than my Dystonia in the past year, but that doesn’t mean it isn’t still an integral part of my life. Most of you have seen the pictures when my muscles were pulling against one another so I thought I would keep things light and happy online since we are thousands of miles away. About six months after our move, I was suddenly falling frequently and dropping things throughout the day. Cooper learned, very quickly, how to pick the items up for me so there was less change of me falling over and hitting my head (again). I reluctantly attended full time physical therapy and was paired with a magnificent therapist trained in neurological movement disorders. She helped me get past the new symptoms of Dystonia and also taught me how to start believing in my ability to live my life without fearing the pain that commonly came along with any activity I attempted to try. I learned that there is ALWAYS going to be pain, but I don’t have to let it define me and what I want to accomplish. Cooper’s assistance wasn’t required after about 6 months of intense therapy so now he steals shoes out of my closet (matching or not) to get a treat for his “help.” How can I resist when he learned how to help me with only two attempts at instruction? Now that I can strap on a backpack and ignore my fear, he loves being on the trails with me and is like a goat on the boulders. Dystonia doesn’t just cause severe pain (as in my case), but can also cause tremors and abnormal posturing which makes it very difficult for people to feel comfortable in public. My specific symptoms were muscle seizing and pain that caused me to become physically ill every evening until I was down to 95 pounds. Many of you probably have no idea what happened during that time while I was struggling to find a diagnosis as most doctors have never heard of Dystonia (or didn’t really grasp the concept during the 3 hour lecture they typically receive during their medical training). I hid out of sight and spent many years trying to regain some of the life that I lost. Now, after 14 years, I have a good grasp on how to handle my body, but so hundreds of thousands are struggling not only with the physical aspects, but also the emotional turmoil that accompanies this disorder. My focus while trying to help others has always been on awareness and education. The Dystonia Medical Research Foundation does more than researching a cure, they also fund awareness and educational activities that help patients, families and physicians better understand the physical and emotional toll this takes on a person’s life. My story has a pretty happy ending after all of these years, but it was through a lot of suffering on my part and support from some amazing family members, friends, physicians, and a therapist with a huge heart that I am where I am today. Cooper and I are asking for your support to help those who are struggling with this disorder in a way that very few understand. Let’s help educate the world about Dystonia and assist the DMRF with creating this awareness so others will receive the much need care before losing years of their lives. Thank you for reading our story!
Throughout February support Cooper and the other pets registered for DMRF’s Dystonia Pet Palooza by making a donation today.