Progressive supranuclear palsy: What is the disease Tom Coughlin’s wife is battling?

JACKSONVILLE, Fla. — Heartbreaking news came from former Jacksonville Jaguars coach Tom Coughlin on Tuesday.

In a New York Times guest essay, he revealed his wife Judy was diagnosed with an incurable brain disorder, leaving her confined to a wheelchair needing round-the-clock care.

RELATED: Tom Coughlin at bedside of wife who is battling an incurable disease

The pair have been married for 54 years. As a team, they have taken on the NFL and impacted the lives of hundreds of children fighting cancer, but now Judy is fighting her own battle with Tom by her side.

Progressive Supranuclear Palsy is a brain disorder that causes problems with walking, balance and later with swallowing. The disorder is rare but it’s hitting home in Jacksonville.

Coughlin said Judy “is trapped inside a body that will not allow her to be the person she was.”

UF Health Jacksonville Neurologist Dr. Joseph Legacy said the disease is like Parkinson’s.

“You get some extra symptoms; those are usually some difficulty with eye movement… Some difficulty with speech, some difficulty with swallowing,” Dr. Legacy said.

Coughlin wrote the disease “steals memories and the ability to express emotions.”

It’s rare and incurable.

“Typically, with PSP or Progressive Supranuclear Palsy, it’s more of (a problem with) executive functioning which is the frontal lobe and that’s more involved with planning, planning out steps to cook a meal, paying bills,” Dr. Legacy said.

Coughlin wrote he’s spent his life preparing for some of the biggest games someone could play, but he wasn’t ever prepared to watch a loved one slip away.

He also revealed he’s taken on the role of a caregiver this past year as Judy has lost her ability to move and speak.

He described his newfound time at home as frustrating.

Sheanta Anderson with Visiting Angels Living Assistance Services shed some light on the day-in-the-life of being a caregiver.

“It’s a full-time job. I would even say it’s more than a full-time job because a standard job you’d get off in eight hours. Caregiving is a 24/7 job,” Anderson said.

She said caregivers are responsible for making meals, bathing, housekeeping and more.

“You can’t say I’m tired today because they need someone to feed them or get them dressed or just be with them to keep them safe,” Anderson said.

In a 2020 study by AARP and the National Alliance for Caregiving, researchers said more than one in five Americans are caregivers.

More and more people are finding themselves in this role.

It may be tiring, but Anderson said it takes a special person to take on the job.

STORY: $1 billion settlement reached in crash that killed UNF student

“Compassion. Patience. The right heart. Dedication. When it comes to family members, it’s the love and dedication they put into it,” Anderson said.

In the words of Tom Coughlin: “don’t forget about the caregivers.”

We’re told Tom and his family are not doing interviews at this time.