Carl Luepker was diagnosed with dystonia when he was 12-years-old, reported KALW. The twitching started when he was 10-years-old. This quickly started affecting his piano playing, something he loved so much to do. The spasms continued over time and eventually he couldn’t play piano anymore. As devastating and difficult as the disease has been for Carl, he and his wife chose to have kids with the knowledge that this genetic disease could be passed along to their children. Though a risk, they took the chance and had two kids, Liam and Lucia. Liam, sadly, would eventually have dystonia as well.
Dystonia is a deteriorating nerve disease that causes the brain to malfunction, leading to uncontrolled spasms that increase in severity overtime. The disease first starts to take away physical mobility and then slowly works its way to speech, making it difficult for one to speak. To read more about dystonia, click here.
Carl describes his speech as sounding like Chewbacca and often makes jokes about the situation despite it being also painful to deal with. It’s been an extremely difficult journey for Carl as he’s always been an extrovert, outwardly expressing himself with animation, but now the disease makes it much harder to be himself. While he feels guilty for passing the disease along to his son, they at least has each other to confide in.
Together the two started looking for treatments. Liam, a very active boy who was devastated to learn he may never be able to skateboard again, tried a few different drugs but none of them were successful. Recently, they learned of a treatment called deep brain stimulation, and it’s been used recently to treat individuals with Parkinson’s disease and depression. It’s success ranges from individual to individual, can potentially have a great out, but holds high risk. It’s also not a simple procedure, it is full on brain surgery with a small chance of brain damage.
