Saying Marvin “Troy” Ellis used to be an active guy would be an understatement. A brick mason by day, the Madisonville, Ky., resident typically was up before the crack of dawn to do the first of his two-a-day workouts. A former high school star athlete, he spent his work days on construction sites, laying brick and pouring concrete. Then on weekends, he’d clean up and put on the clothes of his other profession, an ordained Baptist minister.
In January 2007, this all changed with Ellis’ diagnosis of amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), a disease in which the nerves that control voluntary muscle movements are lost, gradually causing near-total paralysis. Although his physical lifestyle was drastically altered, his spirit and faith remained unshaken. He faced his situation head-on and has never looked back.
The Muscular Dystrophy Association recently named Ellis, 46, the recipient of the 2011 Robert Ross Personal Achievement Award for Kentucky. He was selected for MDA’s highest achievement award in Kentucky for his persistence in overcoming challenges caused by his disease and for his commitment to raising awareness and understanding of people with disabilities.
Ellis uses a power chair for mobility, and though he speaks with the aid of a voice amplifier, his wife Becky usually helps “interpret” what he is saying. He also uses a DynaVox AAC device to help him communicate.
“ALS doesn’t discriminate against gender, race or religion,” Ellis says. “I recognize now that anyone can be affected by this disease at any moment.”
The third-generation brick mason and third-generation minister decided to educate people about ALS. His family, friends and congregation witnessed the toll neuromuscular disease took on Ellis’ body, but his spiritual beliefs kept him strong. Because of his commitment to bring ALS awareness to his community, he was named Kentucky MDA ALS chairman in 2008.
|Ellis and members of the Madisonville Fire Department at the 2010 MDA Fill the Boot® event.|
Becky, who is now Ellis’ full-time caregiver, was a registered nurse in 2006 when Ellis first noticed weakening of his right arm and leg, and a twitching in his arm.
“Me being a nurse, I immediately started researching his symptoms,” she says. “Plus, at the hospital where I worked at the time, I was caring for a person with ALS who had similar symptoms. So when Troy finally got his diagnosis, our worst fears were realized.”
The former marathon runner and track star (he was a top-ranking hurdler in the state of Kentucky) was facing a new reality. And yet exercise was to remain an important part of his life.
“I continued to work out on my own for as long as I was able. Eventually I needed help doing stretching and range-of-motion exercises to help reduce the pain level, to keep my body from ‘freezing up.’”
His wife and sister-in-law take turns exercising Ellis’ muscles at home. He also visits a massage therapist twice a week. “Troy sets goals to strengthen his legs, back, arms and hands,” says his therapist Connie Argier. “He continues to push himself just beyond his expected goals with a never-quit attitude. He’s not afraid of the hard work.”
Ellis also recently started receiving weekly aquatic rehabilitation. “Pool therapy is really nice for Troy,” says Becky. “The water’s really warm and very relaxing. The physical therapy is pretty much the same; it’s just performed in the nice, warm water.”
Therapist Argier, who is also a family friend, says Ellis is most appreciative of his support group. “Troy attributes his success to his family and friends who provide constant support, both physically and emotionally,” she says. “He’s well aware of their sacrifices to accomplish his milestones.” Ellis’ two children, Bethany, 12, and Trontsay, 23, also help out as caregivers for their father.
Shortly after receiving his diagnosis, a physical therapist told Ellis about the many services MDA provides to people with ALS. “When this disease took over my body, it changed my whole state of being, my whole life,” he says. “But instead of sitting down and moping about it, I’ve partnered with MDA to try to help the people know about this disease.”
Ellis and his family have been very active in many MDA ALS awareness activities and have participated in a number of MDA Labor Day Telethons. He also has worked with the Madisonville Fire Department in its annual MDA fundraising effort.
“MDA is very important to me and my family because we know someone out there cares, not only for me but other people in my situation,” Ellis says. “It’s comforting to know that we can pick up the phone and call someone if we need answers to our questions.”
With his religious background, it’s no surprise that his spiritual faith is also unwavering.
Says Ellis, “I hope God will one day help the researchers and doctors find the knowledge they are seeking to cure this disease. I ask that the world will pray and seek the faith of God and in return God will heal the sick.”
To learn about the MDA Personal Achievement Award recipient from your state, visit the PAA Web page.