LOUISVILLE, Ky. — The first inkling for Geralyn Schmitt, a busy Louisville nurse with a family, was a feeling of weakness in her legs. Doctors thought it was a back problem.
She had surgery, but it got worse. After nearly a year of uncertainty, she got a diagnosis in 2010 that hit like a hammer blow. She had ALS, an incurable neurodegenerative disease.
Told she had less than a year to live, she and her husband, Rob, drove home and gathered their daughters at their Jeffersontown home.
"The four of us just sat there crying and holding on to one another as the news sunk in," she wrote in an account for her ALS support group before the disease robbed her of her ability to use her hands.
Now, as the ALS Association's Ice Bucket Challenge campaign sweeps social media, Schmitt, 55, and other local ALS patients want the public to know what it's like to face the devastating disease, which has unclear causes and no known cures.
"Unless you've watched someone go through it, you have no idea," said ALS patient Michael Hamilton of Louisville, who was diagnosed in 2013.
Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, is relatively rare, affecting an estimated 30,000 Americans. It kills most patients in two to five years by destroying movement-controlling nerve cells in the brain and spinal cord. ALS patients steadily lose their ability to walk, swallow, move and eventually breathe.
But Hamilton, Schmitt and others also hope the "ice bucket" campaign — which had raised $100 million as of last week, compared with $2.8 million during the same period last year from July 29 to Aug. 29 — will help create new momentum for research to slow or stall the disease.
Just one drug is approved currently for ALS treatment, but it often extends life by just a few months.
Lucie Bruijn, chief scientist for the ALS Association, said there are promising lines of research. One involves the idea of using stem cells from a patient to help protect the motor nerves that still exist. Others involve identifying gene mutations associated with ALS for the 5 percent to 10 percent of cases that are genetic.
Still more work is centered around finding ways to diagnose ALS and explore possible environmental factors, such as smoking, which may play a role. Veterans, for example, have a greater chance of contracting ALS, but no one is sure why, Bruijn said.
"It's a tall order to make someone better with a neurodegenerative disease," said Jeff Rothstein of Johns Hopkins University's Brain Science Institute and a longtime ALS researcher. The influx of money is "not going to cure it. But there's no question this will help."
Family copes with ALS
Schmitt and her family, who agreed to share their story, spoke recently at their home in Louisville.
Next to her medical bed in the living room, Geralyn sat in a wheelchair unable to move. A breathing machine hummed as it pumped oxygen through her nose and into lungs that can no longer breathe on their own. She relies on a feeding tube in her stomach for nutrition and water.
A special computer screen's cursor registered the movement of her eyes, allowing her to check e-mail and read books. In slurred speech with her grown daughter helping interpret, she said she grew up in Marion County, Ky., one of eight children in a family that raised tobacco and corn.
After moving to Louisville to study nursing at the now-closed Kentucky Baptist College, she met her husband, Rob Schmitt, at a Valentine's Day dance in 1984. They married a year later and had two daughters, Erin and Sarah.
Schmitt spent decades as a nurse, putting her daughters through Catholic schools while ferrying them to piano lessons, soccer games and Girl Scouts. In the evening, they had family game and movie nights.
They were "a close family," said Sarah, 24.
In November 2009, Schmitt noticed that something seemed wrong. She had trouble coughing and found herself tripping over her feet at work. She blamed her shoes at first. She felt pain, and later started having labored breathing.
What followed was common among patients with neurological conditions, which are not easy to diagnose. Doctors sent her to physical therapy. They tested for Lyme disease, then told her she had spinal stenosis and needed surgery. When that didn't work, she went to a pulmonologist.
Finally, in the fall of 2010, she was referred again to a neurologist, who did a test in which electrical impulses measure the connection between muscles and nerves. On Oct. 6, she and her husband went to the doctor's office and got the devastating news.
"It's just like getting punched in the stomach," Rob Schmitt recalled. "I'd heard this was an ugly disease. And it is."
With ALS, the brain's motor neurons can't transmit to the muscles, and weakness starts with being increasingly unable to lift a frying pan or turn a door handle. It slowly morphs into increasing paralysis where the patient can still feel touch, heat and cold but can't move.
"Wherever it starts, it spreads," said Dr. Martin Brown, a neurologist who heads an ALS Clinic at the University of Louisville.
The rates of disease progression vary. Scientist Stephen Hawking has lived with ALS for nearly 50 years, but that's rare.
Schmitt, by contrast, went downhill fast in "a blur of hospital beds, walkers, a stair lift and a never-ending revolving door of home health visits, family and friends," she wrote. "By December, I had become very weak and found it difficult to walk, so I was set up with an electric wheelchair.
"By January, I was almost entirely dependent on the wheelchair and rarely went upstairs at my house except to shower," she wrote. "Each week or month I would lose strength and function of some part of my body.
"I was terrified."
Her daughter Erin Schmitt, 26, who had also become a nurse, said it was scary. "My sister talked about quitting nursing school to stay and care for her," she said. "We didn't want her to go into a nursing home."
Difficult talks, hard decisions
Geralyn and Rob had difficult end-of-life conversations, he said. Geralyn filled out a do not resuscitate order and was unwilling to go on a ventilator to stay alive. But she did agree to use a non-invasive breathing machine that she uses now. In March 2011, she got a feeding tube.
Brown said most of his patients make a similar decision, deciding against being kept alive with a ventilator. But because the mind is unaffected, he said, "You're completely aware that without putting a ventilator in, you're going to suffocate slowly."
Schmitt passes the days reading hundreds of books. She said she has "dark times," but tries to enjoy being with her family as long as she can. They've since brought in caregivers to help at night and other times.
"It's hard — to know it's coming, you just don't know when," Erin said.
Families faced with ALS say that the huge infusion of money created by the viral ALS campaign — which has been undertaken by celebrities, politicians and others — will help provide both care for patients and spur research, even though it's likely too late for their loved ones.
"It's been hard to come up with a treatment if you don't know why it starts or how it spreads," Brown said. "But research has got to be the answer."