You've got to hang on to your faith

By Gina Burgess
Lifestyles Editor

PICAYUNE — “My plans were made. I was going to retire at 57 and enjoy the rest of my life with my family,” Billy Dyle of Picayune shakes his head and smiles. “But, God had other plans for me, it seems.”

“The first symptom I had was that I kept falling out of my fishing boat. I loved to fish, but I kept losing my balance. I just blew it off and joked that I was getting old.”

Dyle is only 46 years old, 45 at the time the first signs began. That symptom, coupled with his legs beginning to disregard his brain’s commands and his hands started getting a bit numb, were signals of the onset of ALS. He didn’t know what was wrong, but knew something was wrong.

The first doctor he went to, diagnosed it as ALS, Amyotrophis Lateral Sclerosis or Lou Gehrig’s disease. The ALS Assoc. website will tell you the whole story of this fatal disease. It is a progressive neurodegenerative illness generally showing up in middle age, around mid-fifties, although young people can contract it as well as children. It attacks voluntary motor muscles like the muscles in your arms and legs.

“Not the heart,” Dyle is quick to say. “The heart works automatically like the digestive system.” The disease doesn’t attack those muscles, nor does it affect the brain. While the brain remains alert and vibrant, the body’s motor neurons degenerate until they can no longer send messages to the muscle fibers which would cause the muscle to contract or relax producing bodily movement. When the muscles no longer receive these impulses that they require for movement, they begin to atrophy, becoming smaller.

There is no cure for this disease, nor is there any treatment that will reverse it or halt its encroach which makes it devastating news to anyone who is diagnosed with it.

“All that first doctor could talk about is the bad stuff,” Dyle said. “All about how I was going to die in a year and there’s no cure, no treatment, no medicine that would help me. There was one place he could send me but they’d just treat me like a guinea pig. I had been given a death sentence without any hope at all.

“I went through all those stages: denial, anger, asking ‘Why me?’ I got on the internet and searched out eveything I could find on ALS. That was the wrong thing to do. All I found was nothing but doom and gloom.

“It was really scary when that first doctor had to look up my disease on the internet to see how to treat me. When I got home, I could still walk around fairly well then, I had to go take a walk with my dad.

“My dad,” Dyle grins, “he’s a great guy. He’s a Christian like me and he just said, ‘You’ve got to hold on to your faith. You know its all in His hands, you’re in His hands and you’ve got to trust that He knows what He’s doing.’ It took a while for me to accept that.

“I had to sit still for awhile, and get right with God. When I finally accepted that God is all our help and to just leave it in His hands and live with it, I was able to move forward. I know He does have His purpose in all this.”

ALS is a rather rare disease. About 5600 people per year are diagnosed with it, and only 10 percent of those contract familial which means it is inherited from parents or it appears in the family. The other 90 percent contract sporadic ALS which is the kind Dyle has. It is not contagious. More people die of ALS than multiple scleroses, and the life expectancy is usually two to five years after the first symptoms appear. Dyle is past that mark and still mobile with a walker and not having to rely upon a wheelchair. ALS occurs throughout the world with no ethnic boundaries, no racial or socioecoonomic boundaries; it can strike anyone.

People with ALS and one other disease can receive Medicare almost immediately without the usual two year waiting period.

“I joked with my wife, Cindy, that it was probably because I wouldn’t be around long,” Dyle laughs, “but it was the ALS Assoc. that got that pushed through congress in 2005. I can’t say enough great things about them. And MDA in Houston, Dr. Stanley Appel gave me hope. He put me through every test out there and then he talked all about the positive things. He went into great detail about all the things I could do to help myself. They have programs there (MDA/ALS Center at Methodist Hospital Neurological Institute, Houston, Texas) that help families adjust and prepare for what’s to come. It isn’t doom and gloom with them.”

A media report from the MDA/ALS clinic in Houston states, “ALS affects several major body functions: breathing, speaking, eating (by limiting the ability to swallow or chew) and walking (mobility). As daunting as this may sound, advances in medical treatments and technology have made it possible for people with ALS to continue leading rewarding lives and remain involved in many activities. In fact, some treatments can prolong survival — sometimes by years — and significantly improve quality of life. The medical experts at MDA/ALS centers or MDA clinics are a great resource for information about living with the various aspects of the disease.”

Dyle said, “Anyone can get this and it just gets to me that young people who should have their whole life in front of them get this and are dying from it. We need more ALS research because they just don’t know what causes it in 90 percent of the cases.”

He is going to Washington on May 13 to talk to Gene Taylor, Trent Lott and Thad Cochran. His appointments are set for May 16. “Other states have low interest loans, like one percent interest loans,” he said, “to help people like me who need to renovate homes to be disability friendly, and to purchase wheelchairs.” Those loans would cover other things that dibilitating disease-wracked bodies need.

When asked what message he would like to convey, he said, “I just want more people to be aware that this disease can attack anyone, at any age with any background. I never dreamed that I’d have something like this.”

If you want more information on this, you can visit www.als-mda.org.

On Sept. 29 in New Orleans there is a “Walk to DeFeet ALS”. For more information or to donate to Billy’s Buckaroos, Billy Dyle’s team, visit http://walkla.alsa.org.

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