By Guillermo Garcia
My name is Guillermo Garcia. I am from San Antonio, Texas, and I was diagnosed with ALS in November 2015. It was ironic, because in August of 2014 we saw the Ice Bucket Challenge explode. Prior to that, we didn’t really have any knowledge of ALS and didn’t personally know anyone who had it. A group of us got involved in the challenge with my daughter’s softball team, and we started challenging everyone to do it. But we still didn’t really have a good idea of what it was.
In October of that year, my wife asked if I’d noticed that I had some twitching going on. I hadn’t until she pointed it out. We waited about a month to see if it would go away, but it didn’t. It just so happened that at the time, I was also having some issues with what we thought was carpal tunnel. I told my doctor about the twitching and was referred to a neurologist for some tests. I was diagnosed with ALS in November 2015, a year after initially noticing symptoms.
Although children and teens are very unlikely to develop ALS, that doesn’t mean they aren’t affected by the disease. 85% of people who do have ALS report having children or grandchildren who are directly impacted. Coping with a parent or grandparent’s ALS diagnosis is never easy, but it is especially hard for children, who don’t have the same emotional maturity as their adult counterparts. Becoming a caregiver for someone is a difficult transition to make when you’re used to having that person take care of you. And since it’s unlikely that any of a child’s friends would have experience dealing with ALS, it can leave them feeling alone, with no one to really talk to.