Guest Column: Beyond the ice bucket challenge

By : José Cofiño
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Jose Cofino

My partner of 16 years, Ben Trust, and I figured we would live a long life together. We were both healthy, regulars at the gym, and also loved to hike. We ate the right things and used sunscreen. As with many in the gay community, the way we looked was important. Then, slowly, I began to have cramping in my legs and abs, and twitching in my arms and legs. I thought nothing of it until after two days of hiking and bike riding, I collapsed when I got off my bike.

Several visits to neurologists, including two visits to the Mayo clinic, revealed the truth we were dreading – I was diagnosed with ALS. Ben and I were devastated. In an instant everything changed and little made sense. We didn’t know much about the disease, just as most people prior to the phenomenon of social media ice bucket challenges didn’t. Quickly, we learned it leads to death, on average, in three to five years.

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