Living with ALS: Couple remains positive

Published 7:00 am Saturday, March 7, 2015

POSITIVITY: From left Cindy and Billy Dyle said that one of the keys to living with ALS is keeping a positive attitude. Photo by Cassandra Favre

POSITIVITY: From left Cindy and Billy Dyle said that one of the keys
to living with ALS is keeping a positive attitude.
Photo by Cassandra Favre


High school sweethearts Cindy and Billy Dyle met in the tenth grade at Picayune Memorial High School. They have two children, Leslie Teague and Lance.
In 2005, the Dyle’s lives changed forever when Billy was diagnosed with amyotrophic lateral sclerosis or more commonly known as Lou Gehrig’s disease.
According to alsa.org, Gehrig, a famous baseball player, was diagnosed with ALS in 1939. This brought national attention to the disease and also ended the baseball star’s career.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, the website states. When the motor neurons die, the brain’s ability to initiate and control muscle movement is lost. Some ALS patients, in the later stages, may become totally paralyzed.
According to the website, approximately 5,600 people in the United States are diagnosed with ALS each year. The average life expectancy after diagnosis is about two to five years.
Cindy was three months shy of her sixteenth birthday when Billy asked her on a date, however, her father wouldn’t let her date before she turned 16-years-old.
“I brought Billy to meet my dad and he instantly fell in love with him and let me go on a date,” Cindy said. “It was love at first sight. He had a lot of charm and was very quiet; well, until he met me.”
The pair graduated in 1977 and were married in July 1978.
Billy worked at Winn-Dixie until 1988. He secured a job at NASA Stennis Space Center, but was laid off a short time later.
In 1988, he began working at Air Products and Chemicals in New Orleans.
In February 2005, Billy began experiencing falling unexpectedly, Cindy said.
“We just thought he was being a klutz or that it was a symptom of old age,” Cindy said. “What we didn’t know then, was that it was one of the first symptoms of ALS.”
In November 2005, there was an emergency at Billy’s job and when he went to run to help, he fell down, but this time he couldn’t get back up on his own, Cindy said.
“The next morning he told me that something was wrong and thought he should see the doctor,” Cindy said. “Our primary care physician referred us to a neurologist. On Dec. 5, the neurologist called and asked us to come in for one more test. After, he told us that Billy had ALS. We didn’t know what the disease was. The doctors gave Billy six months to a year to live and told him to go home and get his affairs in order.”
Prior to his diagnosis, Cindy said Billy was very involved with sporting activities, including tennis, fishing and golf.
“It turned our lives upside down overnight,” Cindy said. “He was unable to return to work and I worked at Hancock until June 2008 because that’s when Billy told me that he needed me to stay at home with him.”
Cindy is Billy’s primary caregiver along with Billy’s mother and their two children.
In the early stages of his disease, Billy walked with the aid of a cane. As the ALS progressed, Billy utilized a walker, scooter, and rehab chair. Presently, Billy cannot support his body and is confined to his bed 99 percent of the time, Cindy said. He also has a feeding tube with a 24-hour feeding pump and a trache or breathing apparatus.
“Caring for Billy is like taking care of an infant,” Cindy said. “I have to do everything for him. This disease robs people of their lives. You become a prisoner in your own home and body.”
Through the years, Cindy said that Billy has maintained the most humble and sweetest of attitudes.
The day the couple told their families, Cindy said Billy said to them, “I don’t know why this has happened to me, we might not ever know, but I hope that one day they will find a cause for this.”
“I fully believe that attitude plays a big role,” Cindy said. “He still has his right mind and has handled this disease with such dignity and grace. He’s definitely a hero. He was given less than a year, and I’m thankful for the years that God has given him and that he has allowed me the ability take care of him. Our friends, family and church family have shown so much love and support throughout this.”
Billy communicates with Cindy by utilizing a board with numbers and letters written on it, lip movements and a computer. Billy uses glasses to move the cursors on the computer screen.
“This is a horrible disease,” Billy said through the computer. “I’m trapped in my body. Just keep up your faith and have a good attitude.”
There are ALS support groups that meet in Gulfport and Picayune. Cindy said that there are a number of people in Pearl River County living with ALS.
The Picayune group meets the first Wednesday of the month in various locations at 11:30 a.m.
The Gulfport group meets at the Lyman Community Center every third Tuesday of the month.
For more information about the support groups, contact Brandi Nickles at 601-364-3326.
Learn more about ALS at www.alsa.org.

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