Fighting ALS - United Way of Greater St. Louis

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.

Before his diagnosis, Steven was very active. He enjoyed playing baseball several times a week, hobbies around his home and working on his cars. In just two-and-a-half years Steven has gone from having some weakness in his right arm, to being in a wheelchair, relying on a ventilator to breathe and a feeding tube to eat.

“It’s relentless,” said Sandra Sullivan, director of marketing and communications at the ALS Association. “People with ALS often experience a rapid digression from a normal and healthy life to one of total paralysis. And because their brain is still intact they become prisoners of their own body.”

Since receiving his diagnosis, he’s moved from his two-story house to a more accessible one-level home. In addition to helping him secure a wheelchair, the ALS Association customized his new living space, providing accommodations like ramps and bathroom benches to suit Steven’s needs.

But in living with this new reality the one thing that hasn’t changed is his relationship with his son. Lucas has received counseling services from the ALS Association to manage the changes he sees occurring with his dad. Steven has been as open as possible about his transitioning health.

“Basically we told him that I’ll be going through some different changes and things are gonna happen, but I’ll try to be there as best as I can,” Steven says. “He had questions about what he sees, like ‘Why is daddy wearing a mask? Why isn’t he walking to the bathroom? Why do you have to help him?’” Lynn says.

“Steve got a feeding tube recently so he had a lot of questions about how that worked and why he needed it.” Though immobile, there is light in Steven’s eyes. His resolve to remain as optimistic as possible about his life is strong.

“You could easily let yourself get down and depressed. But I think trying to focus on positive things about the disease, [like] I’m still able to work; I’m still able to be a father; I’m still able to go to my son’s baseball games,” he says with tears welling up.

“That’s a huge thing. It’s a mindset that you have to almost learn to do. Not so much focus on the negative, but focus more on the positives, and think about ways that you can help others even with the challenges that you have.” And wanting to help others with ALS is why Steven has been such a tenacious advocate.

The Ice Bucket Challenge which began in 2014 was a powerful event that raised awareness and money for ALS research. It even led to the discovery of a gene that contributes to the disease, in addition to the research and development of more treatment drugs. However, support for ALS remains underfunded. Steven is going to the National ALS Advocacy Conference in Washington, DC for the third year in a row to speak before legislators.

He will attempt to generate support for funding for research and legislation that will protect federally funded services currently available to ALS patients, some of which provide the most independence they have. “The big thing for me is to put a face to the disease. I’ve been going year after year. They [legislators] can see the progression. They can see how devastating it can be to a person.”

Though living with ALS has been extremely difficult, Steven decided he had two choices when being diagnosed: give up or keep going. He decided to keep going. He’s been an inspiration to everyone around him.

“I think it’s great to see someone like Steve, who’s had a terminal illness for two-and-a-half years now, who’s still a contributing member of society and doing his part,” says Lynn. “I think it’s important not to discount people with disabilities because they can contribute so much to society, and if we support them, they can have a really positive impact.” Using his disease as a platform to inform and engage has been important to Steven.

With a warrior spirit he says, “Eventually I just decided that this was something I didn’t choose. It’s not anything I did to make it happen so I’m just going to keep going, doing what I do. Do the best that I can with what I have.”

About the ALS Association St. Louis Regional Chapter

The ALS Association St. Louis Regional Chapter provides 18 different services and programs to support people living with ALS and their families. They also support a multidisciplinary, ALS-specific care clinic in St. Louis, at Saint Louis University. Their mission is to help those living with ALS to live with independence and dignity. The ALS Association St. Louis Regional Chapter has been a United Way Member agency since 1998.

Some photos are courtesy of Steven Ziegler.