Guest post by Trece Porrata, a patient with ALS
My husband was challenged to do the Ice Bucket Challenge last year when we were visiting friends in Port Aransas with our kids. As he was filling the bucket with ice, he jokingly asked me, “Wait, what am I doing this for?” I replied, “ALS, silly!” realizing that I didn’t actually know what it was.
Quickly, I went into the house to do some research about ALS. I ended up on the ALS Association of Texas website, reading through ALS symptoms. As I went down the list — muscle weakness, fine motor control issues — I noticed that I had been experiencing some of those same symptoms lately. But I didn’t think much of it at the time — after all, ALS is a man’s disease, right? And we had an Ice Bucket Challenge to complete. I went back outside to tell my husband what ALS was, and moments later I was laughing at his reaction to the freezing water, handing them towels and forgetting all about my symptoms.
Three months later, after two years, three neurologists and hundreds of tests, I am sitting across from my doctor, waiting to hear my diagnosis. He looked up at me, removing his glasses. There were tears in his eyes. He said this wasn’t the kind of news I should hear alone, so if I wanted, I could come back another day with my husband.
“Please, just tell me. I can take it,” I said. I had waited so long to know the source of my problems, I was ready. Slowly, with a great compassion and concern, my doctor told me I needed to get my affairs in order, because I had ALS. In that moment, I knew I had no other choice. I had to fight to live.
After I had recovered from the initial shock of my diagnosis, I began furiously researching. After reading one grim story after another, I found out about the upcoming Walk to Defeat ALS, and asked my husband if we should start a team. Within two weeks, we had a team and 50 walkers, and we were selling t-shirts, bracelets and charms to benefit ALS Texas. My family from California even flew in to walk with us. I felt so incredibly supported.
Everyone keeps telling me that I’m so strong, that I’m handling this so well. But truthfully, I don’t see any other option. I want to live every day to the fullest, and try to keep life as normal as possible for my three young children. I believe that everyone’s a fighter. They just don’t know it until they’re all out of options.
Last year, the Ice Bucket Challenge made unprecedented progress increasing awareness of ALS, and provided millions of dollars for ALS research. But how many people understand what the disease actually is? How many realize how badly we need their support?
For decades, ALS research was extremely underfunded, and researchers are only now beginning to understand what causes ALS. There is still no treatment. And people who live daily with ALS face intense financial, physical and emotional struggles, relying on groups like ALS Texas for information, support and care.
That’s why we need the Ice Bucket Challenge again this year. And every year. Until there is a cure.