Ziegler was diagnosed with ALS in February 2015. The disease began to hit gradually, he said.
“I slowly lost the use of my right arm, then my left arm, right leg, left leg,” Ziegler said.
Ziegler is wheelchair-bound and needs help with pretty much everything. Steve said the loss of independence is a major challenge.
“For me, it’s just more of a frustration in the sense that I used to be able to do so many things,” he said.
He is still able to work from home using dictation software on his computer. But there is a humbling reality that comes with the diagnosis according to Steve.
“The average life expectancy from diagnosis with ALS is 2 to 5 years,” said Dr. Timothy Miller, professor of neurology at Washington University, is Director of the ALS Research Laboratory there.
ALS is a neurodegenerative disease that attacks nerve cells and pathways to the brain and spinal cord.
“When you lose the nerves or the connections between the spinal cord and the muscles, you can`t move the muscles; in fact, the muscles wither away and become atrophied,” Miller said.
And there is no cure. Ziegler said the physical change affects the way he interacts with his son.
“He does know that I’m going through different changes and I had talked to him about those things. He’s four and he can only grasp so much,” Ziegler said.
His circle is tight and supportive. His first date with fiancée Lynn Hogan was just a week before the diagnosis. Hogan said they have learned the fight and get involved in clinical trials.
“I just hope that we can keep him healthy as long as possible and get as many memories as possible,” she said.
Ziegler is willing to do his part. Dr. Miller said Ziegler is one of the study participants helping to draft the Food and Drug Administration's Guidance document.
“This is to provide some guidance to both the FDA and people who want to develop drugs for ALS,” Miller said.
And both Ziegler and Dr. Miller are involved in "Answer ALS,” a nationwide research to determine if ALS is one disease or multiple diseases that all look the same. Ziegler said the unknown actually motivates him to get involved.
“You do the best you can with what you got at the time. And you just keep going with that. It’s more of a day to day thing, I think,” he said.
The ALS Association and Washington University Medical School researchers are hard at work looking for the next big breakthrough. And they’re looking for more participants for the studies and trials they conduct. If you’d like to support the annual ALS Walk, it’s Saturday, June 25 at 10:00 a.m. in Forest Park Registration starts at 8:30 a.m.