In my case, discovering the truth behind my condition took seven years. I was studied by several of the top neurologists in the Bay Area (in other words, San Francisco, California) and only one of these doctors had even heard of dystonia, and was sure that this was not related to the trouble I had walking. Three options were given to my parents to take care of the problem: (1) to inject a poison in my legs and require that I use a wheel chair for the remainder of my life, (2) to perform surgery on my legs to lengthen the tendon in my calves, and (3) to force me to wear plastic braces on my feet and legs in order to train me to walk properly.

Despite being urged by the doctors to make a decision, my father decided to search on the Internet for a better possibility. In his search, he came across a rare disorder called dystonia, and reading the symptoms he began to realize that this sounded exactly like what I was experiencing. He went to Seattle to attend a conference about dystonia (generally only for doctors) on April 18, 1998, where he explained my symptoms. The doctors considered the limited information, and said that it seemed like I might have Dopa-responsive dystonia (DRD). They recommended that I visit the Parkinson’s Institute in Sunnyvale, California, to see Dr. Tetrud, and that I try a drug called Sinemet. The first day of taking this medicine I was walking better than I had during the entirety of my life, and finally I could start to improve. After seven years of uncertainty, misdiagnosis, discomfort, pain, and humiliation, I had an answer.