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What if every simple movement required a plan—and every plan demanded patience, creativity, and a sense of humor? We open up about Kevin’s 27-year journey with spinocerebellar ataxia, tracing the path from double vision in the Army to a three-year diagnostic maze and the systems you have to push through to get help. Along the way, we unpack the difference between treating a rare disease and managing its symptoms, why misdiagnosis lingers for so many, and how persistence with the VA finally led to support that still leaves crucial gaps.

The heart of the story is adaptation. Kevin embraced a “use it or lose it” approach, turning to adaptive martial arts to preserve strength and balance and to learn the art of breaking movement into safe, repeatable steps. That mindset now powers daily life: transfers planned like checklists, chair yoga and seated tai chi for stress and mobility, and a home set up to reduce risk with trained dogs and simple communication systems. We talk candidly about slurred speech being mistaken for drunkenness, relay services that don’t always fit, and the mental fatigue of navigating automated menus when your words won’t land. Empathy isn’t a slogan here; it’s earned through trial and error.

Dreams evolve too. The pyramids and Machu Picchu may be out of reach, but museums with solid accessibility and emerging VR tools bring wonder closer. And humor stays close by. A well-placed joke—yes, even a UFO story—can reset a tense moment and hand back a little control. If you care about disability advocacy, invisible disabilities, rare disease journeys, adaptive fitness, or the practical tools that make life work, this conversation offers grounded insights and honest takeaways you can use.

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