Health: Battling ALS While Banking On A Cure
Photography by Janet Warlick
Adiagnosis of an incurable, fatal disease has not stopped J. Thomas May, president and CEO of Simmons First National Bank. In his office in the executive suite at the bank’s headquarters in Pine Bluff, Ark., a grandfather clock keeps time while a smaller, yet equally impressive desk clock, decorated with an engraved brass plate, clicks each second.
May is one of the 30,000 people living in the United States with amyotrophic lateral sclerosis (ALS).
“Most statistics show that people die within 3 to 5 years from the date of diagnosis,” said May, who was diagnosed in 2005. “There’s not one single thing about the diagnosis that’s good.”
The mental strength that once allowed May to conduct psychological operations as a marine in Vietnam is now focused on combating the neurodegenerative disease. ALS does not define this successful banker, loyal friend and family man.
“After my diagnosis, the magnitude of the medical challenge began to set in. I prayed a lot. After a period of fretting about it, my wife and I — and my kids — came to the belief that we simply needed to turn it over to the Lord. Once I did, there was a sense of peace. I have been reinvigorated to go out and find new resources while I can.”
The month of May is recognized as ALS Awareness Month, and Tommy May, as his friends call him, is an ideal advocate to educate people about ALS, also known as Lou Gehrig’s disease, named for the famous Yankee baseball player who announced he had the disease in 1939. It is a progressive disorder marked by loss of nerve cells in the brain and spinal cord.
While a very small percentage of cases are hereditary, 90 percent are sporadic. No two patients experience symptoms in the same way, as there’s a lot of variability in how fast or slow ALS progresses over time. Whether muscle weakness appears first in the feet, as in May’s case, or in the hands or neck, the disease follows a predictable course after initial onset of symptoms. Muscles in the arms and legs, as well as those involved in breathing, speaking and swallowing become increasingly weak. Paralysis is universally experienced, but sensation (sight, touch and smell) and cognition are typically unaffected.
“I like to say I’ve gone from cane to walker to wheelchair,” he said, his voice raspy from surgery to implant tiny electrodes in the diaphragm to help him breathe easier. An external battery pack signals the diaphragm to pull air into the lungs.
“You know, Christopher Reeve, better known as Superman, also had this surgery by the same doctor,” May said, of his recent diaphragm pacing surgery.
May is a humanitarian of sorts. He just doesn’t need a cape to help him spread his message of renewed faith and the power of positive thinking. Dr. Stacy Rudnicki, who heads up the Multidisciplinary ALS Clinic at the University of Arkansas for Medical Sciences (UAMS), calls May “an ambassador” who “also works behind the scenes, reaching out to patients and families, particularly those recently diagnosed with ALS.”
The J. Thomas May Center for ALS Research and Translational Medicine at UAMS was dedicated in 2008. The focus of the May Center is combinational therapy: testing combinations of existing drugs along with nutraceuticals to shorten the time of getting drug therapy to patients. Dr. John Crow directs the center where some 140 different compounds have been tested on ALS mice in the last few years. Crow has researched ALS for nearly 20 years. As a biochemical pharmacologist, he has the training to understand how the first known cause of ALS — a mutated enzyme called superoxide dismutase — kills spinal neurons in ALS, and how the process can be stopped.
“Science is about 99 percent failures,” Crow said. “Sometimes it gets frustrating. Mouse study after mouse study and sometimes you scratch your head and [ask] what are we going to try next? But when I am around Tommy and other patients, that’s all the motivation I need. I get to see what they go through every day and see how courageous they — and their families — are.”
While there’s a lot more known about ALS than ever before, there’s much more to be done. “Because it’s so rare, most pharmaceutical companies are not willing to make the huge dollar investments in research that need to be made,” May explained. “It really comes down to special grants, private contributions or underwritings by universities to be able to do the kind of research, scientists are doing at UAMS.”
Crow said there was an immediate impact when a team of donors led by May stepped up to the plate. “‘Go to it!’ they said, and we said ‘okay, we’ll gear up!’” According to Crow, researchers at the May ALS Center dramatically increased the size and scope of their testing. “We went from testing 20 or 30 mice at a time to testing 200 or 300 at a time.”
Of course, the downside is the burn rate is pretty fast. But, Crow said, “at the end of the day you’ve hopefully found something that is going to help in this fight.”
May understands and welcomes his multiple roles in sharing his ALS story. He, like so many of his friends with the disease, emphasized his strong faith, a love for family and a deep appreciation for the life he has been given.
“I’ve always been able to speak to groups, but I’m not sure I would have ever been able to stand up before large groups and talk about how my faith has enabled me to deal with a medical challenge. It’s an easy thing to do for me today,” May said.