He jokes he looks nothing like the man on the computer screen. “We're just getting it up the best we can,” he says, a smile on his face, his breathing labored. Kerry Goode is hunched over in his office chair, lifting his arms, doing his best to imitate the man on the screen leading him through a series of exercises intended to keep him mobile for as long as possible.
The chair exercises are part of an effort to stem a tide that has turned against him.
TOWN CREEK, ALABAMA
Kerry jokes that the best time to rob a store in Town Creek, Alabama was on Friday night. That's because the whole town was at the football game. Kerry was the classic high school football star leading the Hazlewood Golden Bears to state championships in both his junior and senior year. Still, he never thought he was that great a running back. Kerry hailed from an iconic Alabama football family. The Goodes were known throughout the state because all four of their boys played for Alabama. Kerry says he realized he might be as good as his brothers when he was named the freshman of the year in the Southeastern Conference in 1983. After college he went on to play and coach in the NFL for 11 years. Years after that he reconnected with his college sweetheart Tanja, and the two married. They settled south of Atlanta, raising their kids.
THE DIAGNOSIS
“It's hard to imagine being in this position, even harder to be here and you can't get out of it.” At first he had breathing issues, but he had never had allergies. Then came the chronic sinus infections, weakness, cramps, weight loss. Tanja saw the change in Kerry one day when she looked at the kitchen window. “I saw him in the yard cutting grass and I noticed that his entire posture was different.”
After a string of doctors visits, they arrived at the devastating reason for the changes – ALS.
“Immediately the first thing I though was 'man, my kids.'” Their youngest daughter is just in middle school.
Two years into his diagnosis he needs oxygen around the clock. He can no longer walk up the stairs to bed. A fundraiser from friends helped pay for a chair lift that arrived in time for Christmas. Getting dressed on his own takes hours. “I lost almost 60 pounds initially. I go from 230 pounds, guy who played football -- at one point I could bench 400 pounds, squatted over 800. Now I can't pick up a glass of water.”
HOPE AND HELP
“How are you, sir?” Kerry looks up as Dr. Jonathan Glass enters the room at Emory Brain Health's ALS Center. “How am I?” Glass answers. “How are you?” The two men have a jovial, close relationship. There is no time for artifice and small talk. On this visit Kerry wants to talk about a new drug just approved for ALS. Doctor Glass says they are figuring out how they will give it to patients. He's also managing expectations. The drug may do little, or nothing at all. But it's hope.
Kerry is one of 550 patients who come to clinic day and do what would normally be impossible -- see every type of therapist, doctor surgeon nurse in a single day.
When he's not with patients, Doctor Glass is in his lab. He's doing a trial that could be a game changer, an effort to finally turn off the genes that cause ALS.
“These things will be put into the spinal fluids of patients. The goal is to turn it off. Boom, it's like a switch.”
STILL LIVING
Kerry runs his Goode Foundation to help other families struggling to pay for medical care. He still goes home to Alabama, beloved by fans and Coach Nick Saban.
“I love football. Still have a passion.” Kerry is among the thousands of players who were plaintiffs in the now settled concussion injury class action suit against the NFL. He is still waiting for a settlement.
He and Tanja were in New Orleans when Alabama clinched its spot in the National Championship. They shared their joy live on Facebook, chanting and cheering for the team they love the most.
“Sports teaches you, if you persevere it will turn around.” But turnarounds require time and that is a harsh reality for people with ALS, most of whom will die within three years.
Tanja says, “You make the best of it, you love harder, you make it work harder, you have friendships harder.” In the past few months Kerry and Tanja have traveled to the Caribbean, gone on an Alaskan cruise, and renewed their marriage vows in Hawaii.
Next Monday they will be at the National Championship among the frenzied fans, pulling for their team. One of Kerry's Facebook friends is calling to start an online petition to name him honorary team captain for the championship game.
The pride of Town Creek, Alabama has tasted victory and defeat. Kerry Goode is facing the last leg of his life's journey with grit and hope.
“Somewhere down the road they may find a cure. It may not help me but I would like to think I had a part in giving some attention to the disease. I got ALS. I'm still living. So it really does not have me.”
