Here is the story of Chris Robinson. He tells us of how a friendship from childhood and a death in his family intersected. This would lead to clarity on what was happening to his friend’s father many years before.
While I do not have ataxia, I advocate because my friend, Erin has Spinocerebellar Ataxia (SCA). We met back in the 1980s while our ages were single digits. She lived near my aunt and uncle in Rochester and I would see her when my family visited from Canada. I remember her dad using a walker, but never knew the reason. Years later I speculated that he had ALS. Sadly, he died in 1989.
One day I received news that would reconnect me with my extended family- my cousin died suddenly from a heart attack. I hadn’t been to Rochester in 24 years. Seeing my aunts, uncles, and cousins again at the same house I visited in my youth made me realize how distant I had become. I arrived about an hour after my childhood friend Erin and her brother left, and that stung! It did, however, spare me from the bombshell I was about to receive when I asked my cousin how Erin has been and if they stayed in touch. When I was told that she had the same condition as her dad, my heart sank! Again, I thought he had ALS, and I knew what that meant for her.
I got to spend a short time talking with Erin at the reception after the funeral, but I couldn’t hold back tears. My tears of sorrow quickly dried, and a sense of curiosity filled me when she said Spinocerebellar Ataxia (SCA). I had never heard of this. She gave a brief overview, but it wasn’t until I researched on my own, and finally reconnected with her older brother (whom I have always called, “Uncle Charlie”), that I discovered the National Ataxia Foundation through a Facebook suggestion. What a Godsend this website has been! While I don’t understand much of the technical lingo, I have come to understand the basics, and it is the difficulties people have described that make me want to raise awareness for ataxia.
Different types of ataxias have various symptoms and age of onset but still fall into the category of a rare disease. Because of this many people can make assumptions about the symptoms they see. The National Ataxia Foundation and Hope For Ataxia have multiple ways to help spread awareness.
We thank Chris Robinson for sharing his story!