Tracy B

My paternal grandfather had a wide gait and difficulty walking and talking. We were told it was like “hardening of the arteries in the brain.” He started showing signs in his 60s. His father had the same condition. An autopsy on my grandfather showed he had OPCA (Olivopontocerebellar Ataxia). My father probably had it but he died at 59 of a heart attack. I started falling backwards a lot. As a nurse, I knew it was neurological problem.

I was a pedestrian hit by a pickup truck in 2007. I broke my pelvis and had stitches to the back of my head. I suffered for YEARS with positional vertigo. In 2014 the backward falls were becoming more frequent especially in public. Eventually I saw a PT who performed the Eply maneuver several times. She is the one who told me I have a downbeat nystagmus. At my neurologist appt he verified it and ordered the MRI of head. MRI showed shrinkage of the cerebellum. At that moment it hit me that I had this horrible mysterious brain disease that I watched my grandfather struggle with for years! I had the same thing. Neurologist ordered genetic testing and it came back SCA6.

I immediately started educating myself on anything I could find about this disease. I’ve found great connection with some Facebook groups. My grandfather had dysphasia and could barely talk. You could tell how frustrated he would get trying to verbally communicate. I’ve always been a big mouth and so far it hasn’t touched that! I have more problems with focusing. I take memantine for the nystagmus and it does seem to help me. I keep moving as much as I can because it makes me feel better. I get stiff if I sit too long. I try my hardest to keep a positive mindset. It’s tough but it could be a whole lot worse!