CLASSIC From Double Vision To Advocacy: Living With Ataxia

Send us Fan MailA rare diagnosis can upend everything—work, family rhythms, even the way you walk to the bathroom at 3 a.m. We open our second year by mapping the real, unpolished path from double vision and clumsy stumbles to a confirmed movement disorder and a life rebuilt through adaptation and advocacy. Kevin shares the winding road from misdiagnosis to clarity, the limits of genetic testing when answers don’t change care, and how symptom-by-symptom treatment through the VA helps even when a cure doesn’t exist.We talk openly about stigma and the pressure to “sound fine” at work, the financial and emotional toll of repeated testing, and the quiet decisions that keep a home safe. Adaptive martial arts became a lifeline—balance practice, upper-body strength for transfers, and a mindset shift from performing moves “right” to doing them effectively. That discipline kept Kevin out of a wheelchair for years and still shapes how we manage energy, fall risk, and anxiety. We also confront grief and the five-year prognosis that once shadowed the family, plus the creativity it took to keep connection alive when speech gets lost over the phone.Travel dreams didn’t vanish; they evolved. Giza and Machu Picchu moved from rugged hikes to virtual exploration, reminding us that accessibility is agency. We dig into the mental toll of everyday tasks, the power of routines, and why humor—sometimes dry, sometimes outrageous—can be armor when strangers ask clumsy questions. Along the way, the dogs play nurse and messenger, we share practical tools like chair yoga and tai chi, and we underline a simple lesson: you can’t judge a disability from a parking lot glance.If you’re navigating ataxia, caregiving, or any invisible disability, you’ll find strategies, empathy, and a few good laughs. Subscribe, share with someone who needs encouragement, and leave a review with the moment that stuck with you most—we’ll read and respond.Support the show