A Rapides Parish sheriff”s deputy rebuilds his life after being diagnosed with Lou Gehrig”s disease.
May 15, 2002
Mike and Molly Wiley always dreamed of remodeling their home, once all seven of the kids were finally out of the house. They wanted to update the bathroom and the kitchen and enlarge the living room for their growing brood of grandchildren. They also envisioned a large porch with rocking chairs to watch the sun set over the pine trees during their golden years.
Instead they’re building a new home behind the old one and trying to rebuild their lives. Last year Mike was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.
The new house will have hallways big enough to accommodate a wheelchair. The sinks will be low enough that Mike can get himself a drink of water on his own.
The couple lives in Rigolette, a small community outside of Pineville. They’ve been married for 20 years, as long as Mike has been with the Rapides Parish Sheriff’s Department. At 54 years old, he is captain of the department’s juvenile division and Molly is a school teacher at Tioga High School.
Mike works with at-risk kids and was in the first class of Louisiana police officers to complete the D.A.R.E. training program to teach children the dangers of drug abuse. He teaches Sunday school at St. Michael’s Episcopal Church and has been scoutmaster with Boy Scout Troop 8 for the last 13 years.
Recently the Louisiana Juvenile Officers Association presented him with the Louisiana Juvenile Officer of the Year Award and renamed its annual $500 scholarship the Louisiana Juvenile Officers’ Michael W. Wiley Scholarship.
Once an active man, his troubles began in the summer of 1999 when his muscles began to twitch sporadically. By October he was experiencing pain in his left shoulder, but he didn’t seek medical treatment. A month later, while firing his pistol at the firing range, his left hand cramped with his finger still on the trigger. With his free hand, Mike pointed his weapon to the ground and called for help. His fellow officers pried the gun from his hand.
In January 2000 he began a series of tests and sought medical attention from doctors in Alexandria, Lafayette and New Orleans, before consulting Dr. Stanley Appel at the Muscular Dystrophy Association clinic in Houston. He underwent more tests, ruling out other possible ailments along the way. Throughout it all, he was slowly losing the use of his arm and his left leg was beginning to weaken.
On Oct. 9, 2001, Appel gave Mike the news he didn’t want to hear. He was diagnosed with ALS.
No one knows what causes ALS or how to prevent it. There is no known cure and diagnosing the disease is difficult.
ALS was first documented in 1869 by Jean-Martin Charcot, a French neurologist. There are several theories about what causes the disease, but no one knows for certain. What is known is how it attacks the body.
It is a degenerative disease of the nervous system. As it progresses, it attacks the nerve cells and pathways in the brain and spinal cord. Motor neurons reach from the brain to the spinal cord and muscles throughout the body. As the motor neurons die off, the brain gradually loses the ability to control muscle movement. Patients in the later stages of the disease are left paralyzed, even though their minds and their senses remain intact.
According to the Amyotrophic Lateral Sclerosis Association, some 30,000 Americans live with the disease. There are 5,000 new cases diagnosed every year – 14 new cases a day. Every two people in 100,000 lives with ALS.
The symptoms may vary with each individual, but can include stumbling, dropping objects, fatigue in the arms and legs, muscle cramps, slurred speech, twitches and bouts of uncontrollable laughter or crying. The hands and feet are usually affected first, making the routine activities of daily living, like dressing and bathing, a cumbersome process. The disease eventually affects the chewing, swallowing and even breathing of ALS patients. When the breathing muscles are affected, patients require permanent ventilatory support to continue breathing. Throughout the degenerative process, the senses of sight, touch, hearing, taste and smell, and the muscles of the eyes and bladder remain unaffected.
Most ALS patients are between the ages of 40 and 70, but the disease does occur in those who are younger. The average life expectancy is two to five years from the time of diagnosis. Half of those diagnosed with ALS live three years or more after their diagnosis. Twenty percent live five years or more, and only 10 percent will live more than a decade. In the advanced stages of the disease, the cost of caring for an ALS patient can cost $200,000 a year.
The most common form of ALS is referred to as “sporadic” since it can affect anyone anywhere, at any time. The “familial” form suggests that it is inherited, even though there is no established hereditary pattern in most cases. Only 5 to 10 percent of the total cases are thought to be of a genetic nature. Within those cases, there’s a 50 percent chance that the offspring will also have the disease.
There is no test or procedure to diagnose ALS. The diagnosis is made by default, after a series of diagnostic tests and clinical examinations rule out all other diseases that may have some of the same symptoms as ALS and may be treatable.
Although there is no known cure for ALS, patients can go through physical therapy and use medical devices to ease the effects of the disease. In 1995, the drug Rilutek was approved for use by the Food and Drug Administration. Studies indicate that it may alter the progression of the disease and prolong the life of ALS patients by a few months.
Mike is taking Rilutek, in addition to creatine, which is produced naturally in the body and helps muscles grow. Every day, he takes a total of 17 pills with his meals.
“I’m still bound and determined to do everything I can to fight this thing and do what I can with it,” he says. “I haven’t come to the realization in my own mind that just because I have this disease that it’s a death sentence for me. I just can’t accept it.”
Even before his diagnosis, Mike had to adjust to his deteriorating physical condition. Within the last year, he has lost his sense of balance and now walks with a cane to steady himself. When he leaves his house or his office for extended periods of time, he gets around in a motorized wheelchair. He has no control over his left arm and keeps it in a sling so that the weight of it hanging from his body doesn’t dislocate his shoulder. His left leg can’t be lifted more than a few inches from the ground, and he is slowly losing control of his right arm and leg.
“You know, this thing goes through your mind about how you’re a prisoner in your own body,” he says, “but I don’t really think of myself like that. I know I have definite restrictions, but I’ve had to change my lifestyle to deal with those restrictions.
“But at the same time,” he continues, “it’s a very humbling thing and it’s very frightening at times. I have my weak moments. My frustration level gets so high. You used to be able to do things and all of a sudden you can’t do anything. You can’t get up from somewhere by yourself. You can’t get a drink of water by yourself. You can’t fix something to eat by yourself. It’s pretty frustrating, and in some of those weak moments I feel pretty down. At the same time I just feel like it’s a temporary setback. I have to gather my emotions and get my stuff together.”
Mike continues to go into work every day and says he’ll continue working “until I can’t get out of bed anymore. If I can get out of the bed and get dressed, I’m going to work. Realistically though, I can retire in January, if that’s what I want to do.”
On average, it takes Molly two hours to get Mike ready for work. He can no longer dress himself. She says, “Some mornings are just better than others.”
When they wake in the morning, Molly props Mike up in the bed and makes coffee for them. Now he drinks it through a straw while they talk about the day ahead of them. “Everything I have to do has to do with a straw these days,” he says.
For Molly, making the coffee in the morning was the first major adjustment she had to make in Mike’s changing life. Every morning Mike made coffee and brought her a cup before she got out of bed. She has a hard time talking about her new job. Her voice quivers and tears are in her eyes.
“I cherish those few moments in the morning when we sip coffee. Not because it’s a cup of coffee,” she says, “but because it was just his first little thing in the morning that he did for me. That’s what’s so weird about this, because to anybody else it’s just a cup of coffee.”
The disease has drastically changed Molly’s life as well. She finds that her role as wife has given way to that of a 24-hour caregiver.
“It’s not that I don’t want to be with him,” she says, “that I don’t want to do something for him or that I resent fixing a meal, scratching his head or whatever it is he asks me to do. It’s just that I would like some time to be able to just sit and talk with him, spend time with him like his wife, not his nurse.”
Mike says, “To me, what Molly’s going through is more traumatic than what I’m going through. There’s something wrong with me, which is why I am the way I am. But there’s nothing wrong with her. She’s just having to deal with me. Like she said before, she has to be a wife, mama and nurse all balled up into one, and sometimes it gets pretty cotton-picking overwhelming.”
But even with the new stresses of living with ALS, both agree that their love for one another has only intensified. As Molly holds back her tears, she says, “So many things you fight about, fuss about and worry about, just don’t matter. They just don’t matter.”
“We’re just going through this holding each other’s hand,” Mike says, “and we test the water from time to time. We talk to each other and let each other know how we feel. Seemingly insignificant things trigger my thought process and I think about what this is doing to my family and me and how are things going to change when I’m gone? I try to mask some of my feelings from her because I don’t want her to worry much, but when I get real down, it’s kind of hard. But no matter what happens, I promised her I won’t sit in this chair and cry by myself.”
Molly says that the strengthening of their relationship is “how this horrible disease has been a blessing to us. Our relationship has gotten better. We’ve learned a lot more about each other, about life and about other people.”
They’re also learning how to receive from others, even complete strangers. They say that when they go out in public, it’s not unusual for strangers to walk up to Mike and offer their assistance. Molly has started keeping a pen and notebook with her to write down names and phone numbers because she says she can’t keep track of them all.
While Mike is aware of how the disease is attacking his body, he still thinks he has something to offer and he wants to be part of a research program that finds the cure for all ALS patients. He says he has nothing to lose.
“Then there’s still the possibility,” he says, “that God’s grace may shine on me and he says, ‘All right, you’ve had enough. I’ll let you up now.’ I pray for forgiveness every day for the things I do and say every day and I hope and pray that I can do good things for the rest of my life, make my life meaningful … That’s part of the spirit that I really catch myself thinking about a lot. If a person can be healed instantaneously, what decides that healing? What decides the motivation? Is it something that comes from myself or does it come from other people praying for me that makes it be a consideration?”
Both believe their prayers are being answered by the helping hands in their community. Molly says that Mike’s good deeds are coming back to him and that “he’s finally beginning to realize what an impact he’s made in this community.”
Mike tells the story of a trusty who has worked with him at the Tioga substation for the last three years, a man Mike describes as quiet, a good worker and just “a good guy.” One day the man gave Mike $5.
Mike says, “That $5 is as important as any contribution I’ve gotten because it came from a person who has nothing. He wasn’t trying to make an impression or just had it and didn’t have anywhere else to put it. It came from his heart. To me, that’s very important.”
Others in Mike’s community are searching their hearts and lending him a hand in his time of need.
Russell Speed is a probation officer for Rapides Parish. He stands in the smoke blowing off the barbecue pits and watches the activity involved with fixing 1,400 barbecue chicken plates.
At the age of 15, he met Mike. He says, “When this many people go out of their way for you, it shows you you’ve lived your life right.”
On a Thursday morning in March, members of the Rapides Parish Sheriff’s Department parked nine industrial-sized barbecue pits at the farmers’ market in Alexandria. They began working at 4 a.m. and were cooking an hour later. Twenty volunteers cooked while another 30 people prepared plates. They burned two ricks of wood, cooked 1,400 leg quarters, prepared 500 pounds of dirty rice, 50 cans of pork and beans, 1,300 cookies, 150 pounds of lettuce for salad and 1,300 dinner rolls.
On the Monday before the benefit, The Town Talk ran a front- page story on Mike and mentioned the barbecue. For only $5 a plate with chicken and all the trimmings, people could make a donation to help him offset his medical expenses. When the story ran in the paper, 1,000 plates had already been sold by word-of-mouth within one day. There was an additional 600 people who called the sheriff’s Tioga substation wanting to buy a plate or make a donation. The sheriff’s department set up an account at a local bank to accept donations on Mike’s behalf.
Capt. Ricky Doyle is the assistant warden of the parish jail and one of the organizers of the benefit dinner. He says of Mike, “He’s done a hell of a lot for the community, and he’s done a lot for the schools. You’ve got to take care of people like that.”
Inside the cinder block building where an assembly line of volunteers is preparing plates, Mike sits at a folding table. When well-wishers approach him, he struggles to get up from a folding chair to greet them.
“It seems like receiving is much harder than giving,” he says. “It’s much harder to deal with. But now I know how other people must feel when I do something for them.”
A television crew is making its way through the door to interview Mike.
He adds, “It’s the most overwhelming show of love I’ve ever seen in my life.”
While some in the community are making donations of money, others are making donations with sweat and elbow grease, helping Mike and Molly build their new home.
They say that, at times, it’s overwhelming thinking about those who have extended their hands to them. But they wanted to acknowledge the help they have received, so they submitted an open letter to their community in The Town Talk.
It reads: “Saying thank you will never be enough, but we wanted to take this opportunity to express our gratitude for your generosity and compassion. We would especially like to thank those of you who donated your time and money to make the barbecue benefit such a success. For those of you who were unable to buy tickets, we appreciate your patience and goodwill. We also appreciate the donations that have been made in Mike’s name.
“We have asked God to grant us His grace and, through your kind words, your gentle touch, your warm embrace and your smiling face, he has answered our prayers. You have reminded us, even in our time of need, that the simple things are the most precious. By His blessing, you have lifted our hearts.
“We ask that you continue to keep us in your prayers. We will always keep you in our hearts and prayers, ever thankful for your helping hands, your healing heart, your gentle spirit and your boundless love.
“May God bless you all,
“Mike and Molly Wiley and family”
The frame of Mike and Molly’s new home is complete. There is a new concrete driveway and a wooden ramp leading to the front door. The wiring and plumbing have been completed and the insulation and Sheetrock will be installed soon.
There is also a large porch with rocking chairs to watch the sun set over the pine trees.