I’ve only seen one case of dystonia professionally… and only watched the treatment, not been on the case myself outside of consultation. It made my heart ache just watching this person move… and move… and move. In this case, from what I saw, the person’s independence had been taken from them. They couldn’t go out without hanging onto someone else for support. In most cases where a patient comes in hanging onto a friend or family member, the PT’s first reaction is to recommend an assistive gait device, like a cane, walker or crutches. Assistive gait devices seemed out of the question in this case, because the devices became more like weapons in this person’s hands. Everyone had to take turns walking with this person, or at least they did in the clinic, because the movements were so severe that the guiding person got a workout trying to keep themselves and the patient upright.
On the below post, the author, a person who suffers with dystonia due to a brain and neck injury, suggests looking at the Dystonia Medical Research Foundation for more info. What I found most interesting on there was all the different kinds of dystonia. Some I had heard of, most no.
Anyone out there have experience with dystonia, personal or professional?
Today is May 8th. It’s Dystonia Awareness Day. I spent eight hours this week in the ER because of an overly aggressive PT appointment. The therapist had never heard of Dystonia. She was willing to help, but, she didn’t understand how my body would react to anything other than a light touch. It reacted by going into crushing spasms in my chest. My pinkie and ring finger felt painfully numb and at times felt like someone was twisting and pulling them backwards. My arms ached like someone who had overworked at the gym from lifting too much weight. And worse of all, came a mind-blowing migraine. I lost my ability to speak and see. I had to get a painful nerve block from the headache doctor. Most of the migraine subsided, however, the chest pain was too much to endure. I felt nausea, dizziness and was having hot sweaty and…
View original post 278 more words