How ALS/Lou Gehrig's Disease Changed My Life

Everybody always asks the same questions: First, they want to know how I got it. Then they want to know what can cure it. And the hardest question of all: "When did you first notice something was very wrong?" Just four years ago, I was riding my bicycle all around New York City, working out regularly, actively socializing, making art, crafting, and teaching Spanish and French in a high school in the inner-city neighborhood of East Harlem. Now I am confined to a motorized wheelchair, and need help dressing and showering. I can no longer speak, not in my own voice anyway. I use an augmentative communication device, an "aug-comm", to speak. I type out the words, which are then "spoken" by a female voice that is clear, if a bit robotic.

I answer these questions honestly because I don't have time to play games; ALS is a fatal disease. And that answers the second question: there is no cure. Aside from one medication that is supposed to slow progression, I take pills to relieve symptoms, which include stiffness, painful muscle spasms, depression, and "emotional lability", the name for sometimes-embarrassing episodes of uncontrollable crying or laughing. How did I get this? Theories include exposure to environmental chemicals, a virus, or even stress. When researchers determine the cause, they will be closer to a cure. As to when I noticed something was wrong, well, that is complicated. When did it all start? Was it when I fell from a chair I was standing on, while changing the bulletin board outside my classroom? Several months later, I could hardly get through a meal without coughing, seemed to have an asthma attack after every workout, could hardly get myself up from a chair, tripped or fell every day, and slurred my speech like a skid-row drunk. This wasn't stress or pre-menopause. I went to the experts, and the prognosis was grim. Most ALS patients die within two to five years after onset of symptoms, some sooner, some later. My clock was ticking and my dreams died.