In this episode, Dayna speaks with Tom, who shares his honest and deeply personal experience of living with a rare form of dystonia called ProGene dyskinesia. Diagnosed at 18 after years of misdiagnoses and uncertainty, Tom reflects on the journey to getting answers, the daily reality of managing 10 to 20 spasms a day, and the emotional weight that comes with explaining a little-known condition to those who don’t understand it. Through humour, openness and clear-eyed insight, Tom brings listeners into his world, sharing the highs and lows with compassion and clarity.

Together, Tom and Dayna explore the impact of dystonia not just on the body, but on relationships, mental health, and identity. From the challenge of navigating the healthcare system to the freedom he finds in fitness and routine, Tom offers a powerful message about self-acceptance, resilience, and the importance of community. Whether you’re living with dystonia, supporting someone who is, or simply want to understand more about this condition, this conversation is a generous and important listen.