Cedars-Sinai Blog

Tackling Life After ALS

Coach Lance McCullah on the field.

Coach Lance McCullah is using the same lessons he gives to his varsity football players to face ALS.

Do what you can for as long as you can do it.

"And when you can't do something you love anymore, figure out a new way to do it," says Lance McCullah.

Lance knows what he's talking about when he offers this advice. He was diagnosed with amyotrophic lateral sclerosis (ALS) in 2012, and has been using a wheelchair since 2014. He continued running his construction business as long as he could. He kept traveling worldwide on missionary trips to build schools and churches. On one of his last ones, he and his crew tiled the second floor of a clinic and poured 30 yards of cement for a basketball court. He pulled himself up and down stairs on his belly.

When the working trips became too hard, he kept traveling purely for pleasure with his wife, Leeta.

He's never given up coaching varsity football for Bakersfield High School. He rolls along the sidelines during games, wearing a headset and checking in with players. He's up before dawn to get to practices.

"And when you can't do something you love anymore, figure out a new way to do it."

Football lessons

Coach Lance McCullah on the field.

He began coaching for a simple reason—seeing too many kids get burnt out, which turned into them hating sports. Most kids aren't destined to become pros, and he disliked seeing players drop out before they learned everything sports could teach them.

"It teaches you discipline to face adversity," he says. "It teaches you to knuckle down and get it done."

He was the kind of coach who got on the turf and participated in drills. When his ALS progressed and he couldn't get around with a cane anymore, he switched to using a wheelchair. He had to think differently about how to coach. Now, helping to set up drills for practices is part of the players' responsibilities. It's been a useful workaround.

"It's really neat to see them give more of themselves to help somebody," Lance says.

A different kind of coach

He's become a similar kind of coach to his local ALS community in Bakersfield. A support group of ALS patients and their loved ones meets monthly. The meetings are slated for an hour, but it's not unusual for them to go on for 2 or 3. Lance and his wife, Leeta, have become the group's senior members. Their approach as a couple is pragmatic, and boils down to a few guiding principles:

  • Get off the internet.
  • Don't be isolated.
  • Figure out how to make this work.

The advice goes for caregivers as well as patients.

"The disease is progressive and changes weekly, sometimes daily," says Leeta, who's been married to Lance 37 years. "Do what you can now, and don't wait."

For Lance, in addition to football, that means spending lots of time with his 3 children and 2 grandchildren. The little ones call him "Papa Coach," and climb on to his chair for rides.

The right kind of team

Coach Lance McCullah on the sideline.

Lance lives in Bakersfield, but travels regularly to Cedars-Sinai for appointments and treatment. One reason is the hope that the data about how his disease is progressing will help patients in the future. He says the staff is the other reason he makes the long trip.

"Every one of them asks how football's going," he says. "They know me."

They're the kind of people he hopes his players will grow into because they express genuine interest in what's important to others.

These wins are the ones that matter most to Lance, for his players and himself—even more than the state championship the team won the year after his diagnosis.

"What I want them to say about me is, 'That's the coach who cared about the kind of person I was going to become,'" he says. "They've taught me to rethink what I do, and how to plan more. That's what it's about—working as a team and relying on other people to help achieve your goal."

He started coaching with a philosophy in mind. Now, it applies off the field as much as it does in the heat of the game. Enjoy the time you have to play today.

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Nerve & Muscle/ALS Program and Expert Team at Cedars-Sinai