As disease cripples father, family provides support, hope
By By ERICA RODRIGUEZ - ERODRIGUEZ@VICAD.COM
Oct. 14, 2009 at 5:14 a.m.
Crossroads Area ALS/Motor Neuron Disease Support Group
Where: DeTar Hospital Navarro first floor classroom, 506 E. San Antonio St.
When: Second Monday of every month, 6:30 - 8 p.m.
Who: The group is open to people living with ALS or other neurological diseases. Family and caregivers also invited.
For more information: Contact Bill Hassel at 361-574-8303.
Facts about amyotrophic lateral sclerosis
ALS, often referred to as Lou Gehrig's disease, is a motor neuron disorder that affects nerve cells in the brain and the spinal cord. Symptoms include weakness, wasting, and paralysis of the muscles of the limbs and trunk, as well as loss of control functions such as speech, swallowing and, eventually, breathing.
ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries. There is no known cure for the disease.
In a population of 100,000 people, about five to six will be living with ALS.
About two to three people are newly diagnosed each year per 100,000 people. The death rate for that population is also two to three people.
Source the ALS Association
Craig Fox's biggest wish in life is simple - he wants to walk his daughter down the aisle on her wedding day.
But the timeline of Fox's 41-year-old life grows shorter every day.
He doesn't know whether he'll live to see that moment. His daughter is only 11.
His death sentence started with a weakness in his fingers he thought was carpal tunnel. Then, within a year, the weakness spread, until he couldn't move his arms at all.
By then, he had learned he suffered from a terminal disease he'd never heard of before.
"The first thing I was told was three to five years," he said. "Go, have fun, without knowing what it is or how it may attack me."
Fox was diagnosed with amyotrophic lateral sclerosis, a motor neuron disease, also known as Lou Gehrig's disease, in February 2008 after almost a year of tests, medications and trips to doctors in Houston. The news came just three years after the unexpected death of his wife, Nancy, from heart failure.
He has two children, Tanner, 15, and Bailey, 11.
"Driving home that day from Houston, my thought was what am I going to do with my kids," he said. "They already lost a mom. Now they're going to lose a dad?"
More than 200 people in South Texas have ALS, according to the South Texas Chapter of the ALS Association.
"It disconnects the muscle from the brain," said Patrick Callihan, executive director of the organization. "This isn't a disease that goes unnoticed. People physically change. The cruelty is they remain aware with full sensation throughout the disease. They just lose the ability to move their own bodies."
Fox's body has changed rapidly during the past year. He is a tall man with a burly build, standing more than six feet tall. His shoulders, once broad and pronounced, now sag forward under the weight of his immobile arms; they flap lifelessly at his sides when he walks or rises from a chair.
A father's story
Outdoors was where you could find Fox, a former Victoria High varsity football player: He loved hunting, fishing and camping. He bought a Ford 250 to take his children camping shortly before his diagnosis. The truck now sits idle in his driveway.
Fox, who designed electrical instruments at Testengeer in Corpus Christi, has lost the ability to perform almost every daily task.
"It slowly takes your freedom away so you have to rely on other people to take care of you," Fox said.
His children, who are his primary caregivers, help care for their father in every way possible.
"I tell my friends at school how I have to plan ahead if I want to go to my friend's house because Dad always says somebody has to be here at the house," Bailey said.
As the disease progresses, the children continue to care for their father by showering, feeding and shaving him.
"Whenever I heard Dad was pronounced with something that was permanent, I was like . perfect," Tanner said in his grandparents' bathroom, rinsing a razor to shave his father's face. Tanner, now a freshman at Memorial High-Stroman, learned of his father's diagnosis the night of his Valentine's Day dance at Howell Middle School.
"That's just what we need," he remembered.
Tanner learned to shave his father at age 14, before he was even shaving himself. He recalled how tiring it was to care for his father in the first stages of ALS.
"You go to bed at 11, wake up around 3:15, and then wait until he gets off to work. That way, if he needs breakfast or if he falls or if anything else happens, you have to be there," Tanner said. "I got him to the car and made sure he was situated, then I came back inside and slept ..."
Three people in the Victoria attend a support group for those with the disease: a retired pastor, a school secretary and Fox, a retired electrical designer.
There is no cure for ALS, but Fox has found help through the newly organized support group.
"Each diagnosis and symptoms are as different as our fingerprints," says Bill Hassel, the retired pastor who organized the group. Once an avid sportsman, Hassel now sits in a wheelchair, his muscles no longer able to support his frame.
Opposite him is Carol Shimeck, wearing a Dallas Cowboys T-shirt, a former school secretary in the latter stages of the disease. Speaking tires her, and she breathes through a respirator.
Others are here, too: Family members who've lost loved ones and people with other motor neuron diseases.
Once a month, members can meet, share, laugh and cry. They eat cookies and share tips on choosing doctors, being diagnosed and coping.
The caregivers gather in a separate area to share stories.
"We're not alone," Tanner says, sitting near the rest of the Fox family.
"I'm bursting to share different ways of managing things," says Mike Shimeck, whose wife was diagnosed with ALS in 2005.
"And we can learn from one another," adds Fox's mother, Peggy.
What the future holds
Fox spends his evenings at his parents' home, eating dinner, watching TV and his children.
There is a calm in the home as Bailey chatters about sleepovers and her grandfather watches the news.
Change is coming.
Before Fox's diagnosis, his parents were retired.
"So we were running around, playing,'' his mother says, "and as soon as we realized that he had ALS and he was going to need a little bit of help, we began to cancel some of our playtime and we began to hang a little closer to home."
The front of the Fox home is a construction site as it is transformed into a place where family members can care for Fox as the disease progresses.
They're hoping the move will give the Fox children more support.
"They don't even question this," Fox says. "That's not easy for kids. They've had a lot to draw on. There's no good age to lose a parent and especially when you're a minor and trying to do your daily actions and go to school."
Fox's outlook on life is completely changed.
"If you knew that you had only two years to live and you knew exactly what day it would be, you'd live a lot differently," he says.
While medical researchers search for a cure or treatment, the Fox family clings to hope and faces each day with laughter and faith.
"If they find a cure to stop it, maybe not to cure it, but if this is what I've got to give up, this is what I've got to give up," Fox says. "Hope can be a lot stronger than anything."
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