Living and Working with ALS
To fight ALS you need a support network at home and work to back you every step of the way.
Just because you have a terminal illness doesn’t mean you have to stop living. Take it from Jeff Baringhaus. Last summer, he started losing his balance and tiring easily, but chalked it up to stress. When the symptoms worsened, he sought advice from multiple doctors before learning he had ALS (Amyotrophic Lateral Sclerosis)—also known as Lou Gehrig’s disease.
After hearing the diagnosis, his wife said the simple words that would become their mantra, "We’re just going to do today and tomorrow...and figure out the rest after that."
Their shared positive outlook is what prompted Baringhaus to share their story. Both husband and wife work at JPMorgan Chase: Jeff as the Risk and Control Lead and Jennifer as Control Officer Director. The Columbus, Ohio-based couple has two young sons—Brady and Evan.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain (neurons) that are responsible for controlling voluntary muscle movements like chewing, walking and talking. As many as 30,000 Americans are currently afflicted with ALS, and there is no current cure. The average life expectancy from time of diagnosis is two to five years.
Acknowledging that ALS "is not the prognosis you want to hear," Baringhaus said his disease has not progressed as quickly as a typical case would. "I’m pretty blessed to be where I am right now."
Baringhaus has been with JPMorgan Chase for nearly 11 years. Last year, not long after starting a new role, Baringhaus noticed he was losing his balance at times. He recalls experiencing difficulty doing simple things, like walking up the stairs or using a fork and knife.
After talking with his physician, he met with a sports medicine doctor who pinpointed certain anomalies with his muscles and nerve cells. Soon after, Baringhaus took a leave of absence and entered the Ohio State University Wexner Medical Center for a week where he underwent a battery of tests. The results led to his ALS diagnosis on November 16th, 2017.
"You can’t give up because the disease is keeping you from doing some things," he said. "You just have to figure out what you can do—and do it."
In Good Company
With that frame of mind, Baringhaus returned to his work in early January, after more than a month of weekly physical and occupational therapy sessions. He worked out a three-day work arrangement with his manager.
According to Baringhaus his manager has been incredibly supportive in helping him adjust and manage his schedule.
"His immediate reaction was to offer me any support personally or professionally that I needed," Baringhaus said. "He said, ‘Your life is the most important thing—that’s first and foremost. Do what you need to do and we’ll be there for you. We’ll do as much or as little as you need.'"
One accommodation Baringhaus needed to perform his job was dictation software, as he lost his ability to write and type. Co-workers jumped at the opportunity to help, providing him with what he needed as soon as possible.
"JPMorgan Chase’s ability to accommodate me has put me in a position to continue to be a contributing member of the organization. I couldn’t ask for anything more than that."
Telling the Team
Initially telling the team wasn’t easy, but Baringhaus said that he is not one to "shy away from being direct."
"The honest truth is sometimes people froze up and didn’t know what to say. And you know what? That’s OK, because that’s a natural reaction."
The advice Baringhaus has for employees working with a colleague in a difficult situation?
Be honest—and listen.
Once his colleagues understood, the team got back to business quickly.
"It’s not all about my disease—I want to work, provide for my family and be a productive member of my team," he said. "But I have to admit that sometimes I just want to have a regular day and be treated like a normal employee."
Baringhaus credits his wife for being his rock since the beginning of his journey with ALS, emphasizing that having a support system in place both at home and at work makes all the difference.
"You can’t let a disease slow you down from living your life," he said.