People often ask me why I care so deeply about neurological advocacy, movement disorders, and Parkinson’s disease or how I got so involved. The answer is simple: Because this work is personal to me. I was diagnosed with Essential Tremor at 13 years old, although my symptoms were noticed much earlier in childhood. Over time, I also developed Cervical Dystonia — neurological movement disorders that shaped the way I experienced confidence, social situations, public speaking, movement, and even my own identity growing up. Living with a movement disorder changes the way you move through the world — physically and emotionally. You become hyper-aware of things most people never think twice about. The way you hold a cup. The way you sign your name. The way people look at you when your body moves differently. The pressure to appear unaffected . The quiet exhaustion that comes from trying to explain something many people don’t fully understand. But somewhere along the way, what once ...
One of the biggest misconceptions surrounding neurological disorders is the idea that if someone “looks fine,” they must be fine. But that couldn’t be further from the truth. Many people living with Parkinson’s disease, Essential Tremor, Dystonia, and other movement disorders become experts at masking what they’re experiencing. Not because they want to be dishonest — but because constantly explaining your symptoms, your limitations, or your struggles can become emotionally exhausting. Sometimes people only see the version of us that we allow them to see. They don’t see the stiffness before we get out of bed in the morning. They don’t see the fatigue after a full day of trying to keep symptoms under control. They don’t see the anxiety that can come from feeling your body move differently in public spaces. They don’t see the frustration of losing control over movements most people never have to think about. And they definitely don’t see the emotional weight that comes with try...