Sometimes it hard to comprehend that someone is struggling if you can’t physically see their pain. Dystonia can have such a big effect on a person that filing for disability is their only option. I’ve heard most people applying for disability from dystonia are denied, sometimes repeatedly. In these instances, they had to hire attorneys.
Someone who had DBS surgery for dystonia told me a story that’s stuck with me. She parked in a handicap spot and someone gave her a hard time because they thought she was taking advantage of the handicap placard. I now carry little cards that give a brief description about dystonia to help people understand.
My dad contracted polio when he was two and uses braces or a wheelchair to get around. I used to be that person who judged and scolded someone for parking in a handicap spot when I thought they had no need to be there. I knew how hard it was for my dad but never considered the obstacles of the other person. Oops, I wish I could take that back.
I don’t have the stamina to walk much. When my hips or ankles decide I’ve done too much, they just quit. I use a wheelchair at work to keep the pain to a minimum and reduce the risk of me falling. There have been multiple occasions when a coworker sees me walking and tells me how happy they are that I can walk again. I explain the “reader’s digest” version that I can walk but only short distances, it’s painful etc. I don’t have a handicap placard and currently have no plan to apply for one.
This video shows the physical struggle. I’m showing my hands since it’s harder to see in my feet and legs. Imagine fighting muscle spasms in your feet, ankles and hip to walk. You can see the dystonia in my right leg. However, my left foot is much worse but it’s hard to see.
Please help spread the word that not everyone with a disability needs to be in a wheelchair or walker. Think twice before judging someone that doesn’t appear to have a disability. Let’s be kind to each other.
Me Myself and My Dystonia 