Tourette syndrome isn’t degenerative – but its impact can be

Posted yesterday at 09:07
by Paul Stevenson

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My name is Paul Stevenson, and I’ve lived with Tourette syndrome all my life — though I didn’t know it until I was finally diagnosed at the age of 46.

By then, my tics had become increasingly complex and physically demanding, and the toll on my body was already well underway. Tourette syndrome isn’t classed as a degenerative condition. It doesn’t cause progressive damage to the brain or nervous system. But when powerful, repetitive tics go unmanaged for decades, they can have a devastating impact on the body. 

Over the years, my joints have taken a battering. Complex motor tics like leg dropping and violent shoulder movements have worn down cartilage, led to repeated dislocations, and left me with chronic pain. I now live with permanent knee damage, unstable shoulders, and constant neck pain — all consequences of the relentless, involuntary movements my body has endured over time. 

I’m now 61, and as I grow older, my physical resilience naturally declines. But combined with the years of untreated Tourette’s, it feels like my body has aged far beyond its years. There’s a cruel irony in that — the condition itself isn’t degenerative, but its long-term impact certainly can be. 

But imagine this: 

It’s the late 1960s. A young boy in a classroom fidgets constantly, blurts things out, and makes involuntary noises. Instead of being punished or labelled as disruptive, a perceptive teacher notices the signs and refers him for assessment. He’s diagnosed with Tourette Syndrome early, at a time when most hadn’t even heard of it. 

He doesn’t have to live in confusion or shame. Instead of being told he’s naughty or lazy, he’s met with understanding, practical support, and reasonable adjustments at school. His family are guided in how to support him. He learns that his brain works differently — but not wrongly. 

He receives occupational therapy and early interventions to help manage his tics. His strengths are seen and nurtured. His self-worth grows. His body is protected from years of damage because someone stepped in early. He still has Tourette’s — but he doesn’t carry the weight of misunderstanding or physical breakdown. 

That boy becomes a man who doesn’t have to wait until midlife to understand himself. He moves into adulthood with tools, support, and confidence. His condition hasn’t gone away — but neither has it robbed him of physical health or self-belief. 

That wasn’t my path. 

But it could be the path for the next generation — if we fight for early diagnosis, timely support, and a world that meets neurodivergent children with empathy, not judgement. 

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