Before taking the field for a big game, Kerry Goode would give himself a pep talk.
“Stay in the moment,” the former star running back at the University of Alabama would tell himself. “Don’t get ahead of yourself. If things go wrong, don’t go wrong with it.”
Kerry is putting those words to use now as he wages an off-the-field battle against his own nervous system.
In 2015, he was diagnosed with amyotrophic lateral sclerosis (ALS). It’s commonly called Lou Gehrig’s disease. There is no cure for the neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
Goode’s symptoms started with breathing issues, chronic sinus infections, weakness, cramps and weight loss. His wife and full-time caregiver, Tanja, saw a marked change while watching Kerry through the kitchen window.
A Debilitating Disease
After a string of doctor’s appointments, Kerry received the heartbreaking diagnosis.
“It’s a disease that comes on out of the blue,” says Jonathan Glass, MD, founder and director of the Emory ALS Center.
“The nervous system starts to break down. The way it breaks down is by pulling the nerve fibers that wire us together away from the muscles,” Dr. Glass says. “And what happens when the muscles aren’t connected? The same thing that happens when the light bulb isn’t connected to the wire anymore. It stops working.”
When the disease begins, symptoms may be mild and include slurred speech, muscle twinges, difficulty swallowing and muscle cramps. As ALS progresses, muscle weakness will spread to other parts of the body. People may find it difficult to move, swallow, speak or breathe.
Symptoms and rate of progression vary from person to person, but people diagnosed with ALS generally live about three years.
Unknown Cause of ALS
Dr. Glass says there’s no diagnostic test for ALS.
“We can’t see the problem except in the outward expression of it in people,” he says. “We can’t see it in the spinal cord. We can’t see it in the brain.”
Unfortunately, confirmation of the disease usually comes postmortem when a neuropathologist like Dr. Glass examines protein abnormalities in the brain and spinal column.
While the cause of the disease is unknown, Dr. Glass says genetics may play a role. One in 10 people diagnosed with ALS has a family history of the disease, and researchers have identified more than a dozen genes that may play a role in ALS. Football players like Kerry are also at higher risk of developing brain and nervous system disorders, he says.
“There’s something about time and aging that interacts with the nervous system,” Dr. Glass says. “The nervous system is fragile … and it breaks.”
Homeostatic mechanisms in the body that keep the nervous system working as it should get slower and don’t function as well as you get older, he explains.
“And those normal things that are constantly happening to us every day can’t be repaired as quickly, and things start to change,” says Dr. Glass. “Neurons start to die, and we start to see clinical features of that disease.”
A Devastating Diagnosis
The diagnosis was devastating for Kerry since he could always rely on his body to perform.
After a standout career at the University of Alabama, Kerry Goode spent 11 years in the NFL, first as a running back, then a strength and conditioning coach.
Eighteen months after his ALS diagnosis, Kerry spent two hours each day dressing himself and required supplemental oxygen throughout the day. A year after that, he used a wheelchair full-time and a BiPAP machine to help him breathe.
“At one point, I could bench over 400 pounds, and I squatted 800 (pounds). Now I can’t even pick up a glass of water,” Kerry says. “It’s hard to imagine being in this position. It’s even harder to be here when I can’t get out of it.”
Acceptance and Hope
Pharmaceutical companies and bioengineering firms are working to develop drugs and genetic breakthroughs to understand how and why the disease happens.
For Kerry though, that breakthrough may come too late. He’s drawing on the lessons he learned playing football to carry him through.
“Accept where you are,” he says. “Embrace it. Don’t keep looking back because it’s not coming back.”
Visit Emory ALS Center online for more information on the diagnosis of ALS, treatment options and patient resources. Click below or call 404-778-7777 for more details.
About “Your Fantastic Mind”
Emory University and the Emory Brain Health Center have partnered with Georgia Public Broadcasting (GPB) on a television series, “Your Fantastic Mind,” which features compelling stories about brain-related health and wellness.
“Your Fantastic Mind” began airing Season 2 in September 2020 on GPB’s statewide television network. The Emmy-winning news magazine-style show highlights patient stories and reports on cutting-edge science and clinical advances in neurology, neurosurgery, psychiatry, sleep medicine and rehabilitation medicine.
For a complete listing of Season 2 episode air dates and times, visit emoryhealthcare.org/yfm.
Season 1 of “Your Fantastic Mind” examined topics including sleep apnea, obsessive-compulsive disorder, Alzheimer’s disease, stroke, PTSD, Huntington’s disease, migraines and video gaming disorder, which has been designated a mental health disorder by the World Health Organization.
Jaye Watson is the show’s host, writer and executive producer. She is an Emmy- and Edward R. Murrow award-winning veteran Atlanta journalist and video producer for the Emory Brain Health Center.
Emory Brain Health Center
The Emory Brain Health Center uniquely integrates neurology, neurosurgery, psychiatry and behavioral sciences, rehabilitation medicine and sleep medicine and transforms patient-centered care for brain and spinal cord conditions through research and discovery.
Bringing these specialties together allows more than 400 researchers and clinicians from different areas to collaborate to predict, prevent, treat or cure devastating diseases and disorders of the brain more rapidly. These collaborations are demonstrated in numerous centers and programs across the Brain Health Center, including the Epilepsy Center, Pituitary Center, Stroke Center, Treatment-Resistant Depression Program and Veterans Program.
Emory’s multidisciplinary approach is transforming the world’s understanding of the vast frontiers of the brain, harnessing imagination and discovery to address 21st century challenges.
Learn more about comprehensive, diagnostic and innovative treatment options at the Emory Brain Health Center.