What is Ataxia?

I often describe having ataxia is like having your body and brain trapped in a never-ending game of “Simon Says,” but Simon is always drunk.

He slurs his commands, leaves out verbs, and smells like tequila. Your body struggles to respond, swaying and stumbling as you try to follow instructions that change with every hiccup. The frustrating part? Simon will never admit he has a problem. He won’t seek help, read self-improvement books, or suddenly decide to get sober after a life-changing moment. So, those of us with ataxia must learn to navigate life while trying to follow the erratic commands of a perpetually intoxicated Simon.

The term "ataxia" comes from the Greek word "ataktos," meaning "disordered" or "unarranged." It combines the prefix "a-" (meaning "without") and "taktos" (derived from "tassein," meaning "to arrange"). Ataxia literally refers to a lack of order or coordination in movement. The word has been used in medical contexts since the early 19th century to describe the uncoordinated movements characteristic of the condition.

Now, ataxia is a neurological condition characterized by a lack of voluntary coordination of muscle movements. It can affect balance, speech, and eye movements, making tasks that require precise control, like walking or writing, challenging. Ataxia can result from various causes, including genetic disorders, damage to the cerebellum (the part of the brain that controls coordination), strokes, or alcohol intoxication. Treatment often focuses on managing symptoms and improving quality of life through physical therapy and other interventions.

The National Library of Medicine estimates 150,000 to 200,000 people in the United States are living with ataxia.