In the summer of 2014, Steven Ziegler’s life began to take a dramatic shift. “I had muscle twitches starting in my right arm, and then to my left arm. Then I started to have them in my chest, back, abdomen and then my legs,” Steven says.
He went to the doctor and was diagnosed with fasciculation syndrome, a benign neurological disorder that causes muscle twitches. Then one morning in September when he was leaving for work, he knew it was something more serious. “I couldn’t turn the key all the way to get the truck to start,” he says.
After going through rounds of tests, Steven, an electrical and computer engineer for Boeing, was referred to a neuromuscular specialist at Washington University. Finally, in February of 2015 he received his diagnosis. He was told he had ALS. He was only 32 years old.
“That day I went back to work. It was kind of a coping mechanism I used to distract myself,” Steven recalls. “Before I got the diagnosis I did quite a bit of research just to see what I could have. So I kind of knew about ALS, what it was and how it progressed.” Getting a conclusive answer provided Steven with some relief. “But knowing the diagnosis there was some fear and sadness,” he says.
ALS (amyotrophic laterals sclerosis), also known as Lou Gehrig’s disease is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Steven, now 34, doesn’t fit the usual profile of those with the disease, as it typically develops in people between the ages of 40 and 70 years old.
Approximately 20,000 Americans have the disease at any period. And though research and treatment is helping those with ALS live fuller lives, the disease has a zero-percent survival rate. With the help of his girlfriend, Lynn, who’s become his caretaker, support from the ALS Association St. Louis Regional chapter, a United Way-supported agency, and the joy of his five year-old son, Lucas, Steven perseveres, but it’s been hard.