Former New York Giants coach Tom Coughlin revealed that his wife, Judy, is suffering from a rare and incurable brain disorder.
In an essay for the New York Times, Coughlin, known for leading the NFL team to two Super Bowl wins, said that his wife was diagnosed with progressive supranuclear palsy in 2020, after years of doctors trying to figure out what was wrong.
"Our hearts are broken," Coughlin wrote. "Judy has been everything to our family. For the past four years, we’ve helplessly watched her go from a gracious woman with a gift for conversation, hugging all the people she met and making them feel they were the most important person in the room, to losing almost all ability to speak and move."
He called her decline "gut-wrenching" and candidly described how difficult it has been to step into the role of caregiver.
"I’ve learned firsthand caregiving is all-consuming," wrote Coughlin, who is also the founder of the Tom Coughlin Jay Fund Foundation for pediatric cancer. "It is mentally and physically exhausting. Sometimes you just need a break. When Judy is having a good day, then my day is good. But then there are dark days — those days that are so full of frustration and anger, they have me feeling like a failure and pondering the unfairness of the disease. I’ve spent my entire life preparing for some of the biggest games a person could play, but nothing can prepare you to be a caregiver who has to watch a loved one slip away."
The couple married 54 years ago.
What is progressive supranuclear palsy?
Progressive supranuclear palsy, or PSP, is very rare brain disorder that affects one's speech, vision, balance and ability to walk and make other movements.
It's a neurological disease similar to Alzheimer's or Parkinson's, although much rarer than those, Dr. Holly Shill, M.D., medical director of the Muhammad Ali Parkinson Center at Barrow Neurological Institute in Phoenix, explained to TODAY.
"It's quite uncommon as a diagnosis," Shill said, adding that the disorder can be difficult to diagnose.
PSP is sometimes misdiagnosed as Parkinson's disease, for example. Both diseases typically begin in late middle age and share symptoms that include stiffness and muscle rigidity, movement difficulties and clumsiness, according to the National Institute of Neurological Disorders and Stroke.
However, PSP progresses more rapidly. While there is no cure for the disorder, there are ways to manage patients' symptoms, including medications and therapies.
"For instance, if they have Parkinsonism, we might treat them with Parkinson's medications, and sometimes that helps," Shill said. "If they have a lot of balance issues, we'll send them to physical therapy and that can help them maintain their balance or reduce their sense of falling. Sometimes they have mood or cognitive changes, and we can address those through medications. So even though we can't cure it, there are a variety of ways we can help people cope with the illness."
What is the main cause of PSP?
Doctors don't yet know exactly what causes the disorder, although there are theories.
Experts believe it involves a "gradual deterioration" of brain cells, mostly in the brain stem, according to the National Institute of Neurological Disorders and Stroke.
This may be caused by a buildup of a protein called tau, which is involved in brain function, the Cleveland Clinic explains online.
The disorder is not inherited.
Progressive supranuclear palsy prognosis
As its name suggests, PSP gets progressively worse, with people becoming "severely disabled" within three to five years, according to the institute.
People who have the disorder are at risk of complications such as pneumonia, choking and head injuries due to falling. However, people who have PSP can live for more than a decade after symptoms begin as long as they're getting proper care and medical attention.
While doctors don't know everything about the disorder just yet, they may have answers soon.
"This is a very hot area of research," Shill said. "Even though we don't have a cure yet, there is a tremendous amount of research looking at what causes it, how does it progress, and how do we slow down that progression."