Chie and Steve Smith in their home. (Photo:AP Photo/Tony Gutierrez)
Every few days, Chie Smith, a former cheerleader for the Oakland Raiders, chops, dices, and blends together a selection of fresh, raw vegetables, cooked wild salmon, and quinoa in her Richardson, Texas, home.
The smooth puree that she portions out into equal servings are for her husband, former NFL player Steve Smith, 50, who was diagnosed with amyotrophic lateral sclerosis (ALS) in 2002 and has been using a feeding tube since 2006.
It’s important to Chie that her husband eats homemade, healthy food. Shortly after he got his feeding tube, he was diagnosed with diabetes, which led Chie on a search for a nutritionist who taught her how to make healthy food for Steve at home. “With great nutrition, your body responds, and I feel that for Steve, the diet has helped alleviate some of the discomforts that people with feeding tubes and who are bedridden typically face,” she tells Yahoo Health.
There is no cure yet for ALS, which progressively destroys the motor neurons in the brain that control muscle movements. Those who have the illness are typically given a two- to five-year life expectancy, she says, but Steve — who played for both the Oakland Raiders and the Seattle Seahawks — has now lived with ALS for 13 years.
Doctors are unable to tell just how slowly or quickly ALS will progress in an individual. It affects people in different ways, says Brian Hyman, MD, a neurologist at the Mount Nittany Physician Group in State College, Pennsylvania. One patient with ALS may have more limb involvement than bulbar involvement (ability to speak, chew, and swallow), while another patient may have more bulbar involvement than limb involvement.
An estimated 30,000 people in the U.S. have ALS at any given time, according to the ALS Association. Last summer, the Ice Bucket Challenge helped to bring attention to the disease and raised more than $100 million for research efforts. There is also an ALS Awareness Month —this month of May — to raise awareness.
The condition is genetic in a small percentage of cases, but researchers are still looking into other potential causes. “There is a possible connection between environmental exposures and ALS,” Hyman says. “Sometimes, ALS presents in cases of extreme exertion, which is why there may be an increased occurrence among selected athletes.”
Steve Smith during his football-playing days — before his ALS diagnosis. (Photo courtesy of the Smith family)
Research has also shown a potential higher risk among military veterans, particularly those who served in the Gulf War. But overall, medical professionals say research is still inconclusive, because ALS appears to strike randomly.
Needless to say, the ALS diagnosis, when it was first given in 2002, dealt a severe and crushing blow to the Smith family. And it’s clear that the pain of watching a strong football player, husband, and father progressively weaken, lose his muscle mass, and virtually all his bodily functions, is immeasurable. “But for us, this is our life, and we decided long ago that we were a strong family unit and we would stay that way,” Chie says.
That means that from an early age, the couple’s two children, Dante and Jazmin, learned to take care of their father. Now in their early 20s, “they can take over completely and take care of their dad” if Chie ever needs to be away, she says.
The Smith family: Dante (top left), Jazmin (top center), Chie (top right), and Steve (bottom center). (Photo courtesy of the Smith family)
Fairly early on, Chie also decided that it would be best to keep Steve at home and seek out the best home care, as opposed to utilizing care typically offered by ALS multidisciplinary clinics. “Since there is no cure for ALS, the doctors were just watching Steve and monitoring his decline, so we decided it was best to branch out on our own and do the best we could for Steve at home,” she explains. That included hiring a full-time nurse/caregiver and a couple of personal trainers Chie met at her gym to work with Steve — one who comes in three days a week to stretch and massage him, and a second to help him out of bed so that he can stand up every so often and be taken off his ventilator.
“Initially, he couldn’t come off it for more than a few seconds, but in the last one-and-a-half years, he’s been able to spend longer periods off the ventilator and he’s now up to 15 minutes,” she says. “It doesn’t mean he’ll improve, but his doctor feels that the care he’s receiving may be making Steve feel calmer and less anxious, so that he’s able to breathe easier.”
Steve himself is resolute and determined to live: “I want to walk around the room with no help from nobody,” he writes in an email. “I breathe on my own twice every week, that is like victory for me.”
Although he may have lost the physical strength and capabilities he once had (Steve is bedridden and needs help for everything), he is not ready to give up the fight. He has a special computer with a keyboard he operates with his eyes. It allows him to keep in touch with all his friends and stay up-to-date on current affairs, medical news, and the latest movies. He has even written a memoir of his football years and his life after ALS.
According to the ALS Association, there is some evidence that patients are living longer, in part due to clinical management interventions and drugs such as Riluzole, which can slow down the illness’s progress in some patients. And in different parts of the country, further research is being done into possible treatments and cures. In the department of Neurosurgery at Penn State Hershey, for example, researchers have been assessing the protein profiles of individuals with ALS to determine which ones have a slower progression of symptoms, in order to potentially inject these proteins into the spinal chords of individuals where the disease appears to be progressing faster.
Both husband and wife firmly believe that a cure for ALS is imminent: “That’s why we feel more than ever that we must keep Steve’s body in the best shape possible for when there is a cure,” says Chie.
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