It’s another cool, crisp autumn morning, and Lori Banker- Horner is up before daybreak. She rises early to prepare herself mentally for the day to come.
She cooks breakfast for her three children, Daniel, Julia and Billy. She smiles at them as she makes French toast – their favorite.
Ring-ring. Banker-Horner knowingly looks toward the phone. It’s time to resume fighting where she left off earlier this morning. She often doesn’t get much sleep. Her job requires her to be on-call 24/7.
Ring-ring. She approaches the phone, determined and confident. There’s no place for fear in a time of war.
Banker-Horner’s fight is against an invisible foe, but she bears witness to its devastation. She can’t stop it from killing. It has no Achilles’ heel.
Banker-Horner’s combatant is Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease. She is the patient services coordinator for the ALS Association’s Wisconsin Chapter.
ALS preys upon people indiscriminately. Anyone of any age can fall victim to the disease. One out of 50,000 people are attacked and given its death sentence, rarely living more than five years.
“Hello, this is Lori,” she says, answering the phone and beginning today’s skirmish against the fatal disease.
“It’s so hard because there’s no treatment, no cure,” Banker-Horner says, taking a moment to think about her profession. “Not being able to give someone what they need when they look at you, not being able to say you’ll get better is hard. But the worst, it’s losing them. So we try to increase their quality of life and give them more time. It’s basically symptom management.”
Banker-Horner knows that small victories make the difference in this war. That’s why she spends so much time with her patients and their families.
“Lori is with her patients and their families throughout the entire heartbreaking process of losing a loved one,” says the mother of one of her patients, who asks not be identified. “She shares our emotional rollercoaster ride in a very professional way.”
The mother’s son was diagnosed with ALS at age 32.
“It didn’t take me very long to realize that soon I would be witnessing one of my children lose his life to ALS,” the mother says. “She helped bring me comfort in more ways than I could ever count.”
The degenerative disease kills the cells that send messages to muscles.
“The muscles we’re talking about are everything from eating, swallowing, speech, walking and ultimately breathing,” Banker-Horner said.
While the victims lie paralyzed, a machine can breathe for them — prolonging their lives.
“So there are some really difficult choices in this,” Banker-Horner says.
The Wisconsin Chapter of the ALS Association evolved from a local support group and a team of volunteers to an official chapter in 1987. Dr. Paul Barkhaus began to focus on ALS in the late 1990s. Over the years, Banker- Horner and Barkhaus worked to make the clinic one of 28 Centers of Excellence in the nation.
One of the key missions of the chapter is to raise awareness of the disease.
“Lori -Horner has been the heart and soul of the ALS Association for over 10 years,” Barkhaus says. “In 30 years of practice, I am hard-pressed to think of someone so selfless with her time and humble in the service of others. Besides her regular duties, it would be impossible to estimate the hours she spends making home visits, responding at all hours to phone calls and e-mails.”
To offer patients treatment options that would otherwise be unavailable, Banker-Horner began developing programs to aid those affected by ALS. She organized and maintains an equipment loan program. She organizes new patient groups, holiday gatherings and picnics to provide respite for families.
Despite the difficulties of her patients’ deaths, Banker-Horner says it’s their lives that amaze her.
“It’s how they appreciate life, not that they are dying,” she said. “They’re amazing in how they encourage others in the midst of their struggles. You’re talking about losses they experience every day, the loss of movement, their hands, and yet they are still encouraging others. I want to keep that going in my head, not focusing too much inward.”
She was nominated for a Health Care Heroes Award by Caryn Easterling, president of the board of directors of the ALS Association’s Wisconsin Chapter.
