Sarah Altis

It started about 12 years ago. My dad was diagnosed with Ataxia. I wasn’t really sure what that meant, but I spent the next several years watching his steady decline. His speech slurred, his walk was unbalanced, and his fine motor skills deteriorated. In 2022, I had a horrible case of vertigo. I went and got the eply maneuver done (thought they were going to rip my head off my shoulders), and everything went back to normal. Almost exactly one year later, I had another episode of severe vertigo. Another eply maneuver, but without success. I went back for another round about 3 weeks later and still no change. I began to feel motion sick without being in a vehicle. I finally went to the doctor again for it and was referred to an ENT, thinking it was inner ear. The ENT cleared me, but referred me to a Neurologist.

Thank goodness that neurologist ordered an MRI. As soon as they called me with the results that showed “significant cerebellar shrinkage, I knew exactly what was wrong with me. I got a referral to Dr. Dubinsky at KU Medical Center and have officially been diagnosed with hereditary autosomal dominant Spinocerebellar Ataxia, type Unknown.

Like everything, I am having good days and bad, but my biggest struggles come first thing in the morning. I struggle with carrying my coffee cup from the kitchen to the living room without spilling it. My stance has become pretty wide with the ataxic gait and stairs frighten me beyond belief. I’ve even been known to go down them on my bottom. I love gardening and baking, both of which I still do, but it definitely takes me longer to get down and pull weeds or fill my flower pots with dirt than it used to. And my cookies and pies aren’t all always the exact same shape like they used to be. But I will keep pulling and rolling dough as long as the Good Lord sees fit to let me.

Having watched my dad go through all this already, I am almost scared to stop doing things. He retired right before he was diagnosed and pretty much just sat down and gave up because it was hard. Now, he’s wheelchair bound and struggles sometimes with holding his silverware. It’s just not my nature to quit.