Ever since the accident, John Wynne’s memory hasn’t been so good. But “one funny thing I do remember,” Wynne says. “I remember the center for head injuries’ website said, ‘Play golf, not football.’ That always struck me as funny.”
No wonder. The Cherry Hill, N.J., resident suffered a traumatic brain injury (TBI) 12 years ago while playing golf. Struck on the left side of his head by a golf club, Wynne, 41, was fortunate not to have been killed. But the TBI affected his ability to walk and talk and remember things, and left him with headaches, tremors and a loss of feeling in his right hand.
There was another effect of the injury, one that baffled and frustrated Wynne until fate finally identified it to him when he picked up a brochure in his doctor’s office.
It’s called pseudobulbar affect - PBA. (The A refers to “affect,” as in “affectation,” and is not a misspelling of “effect.”) It’s a neurological disorder often caused by a TBI. In layman’s terms, PBA causes a person’s emotions to go haywire – crying or laughing uncontrollably, sometimes far out of proportion to the sadness or levity of a situation and sometimes in complete contrast to what the person is actually feeling.
“It’s a complete mismatch between your inner feelings and your outward expression of emotion,” Wynne says.
“It’s the most under-diagnosed, under-treated, under-recognized condition around, in my opinion,” says Dr. Jonathan Fellus, a neurologist and chief medical officer of the International Brain Research Foundation, who has treated Wynne for several years. “For that reason, it’s almost like a perverse version of don’t ask, don’t tell. Doctors don’t ask, patients don’t tell.”
A ‘one-in-a-million shot’
Wynne never saw the broken-off clubhead that was whizzing toward him on that June day in 2001, randomly and improbably locked on target for his skull like some perimeter-weighted missile. He knew his partner was in the woods to his left, dealing with an errant drive, but Wynne was focused on his own ball and his next shot.
“The next thing I knew I was just laying on the ground,” Wynne says. “It came out awhile later that he had wrapped his club around a tree and the clubhead came off. It was such a freak thing. Such a one-in-a-million shot. I was over 50 feet away from him and it hit me a glancing blow. It hit the left side of my head and knocked a pretty good dent in my head.”
Wynne doesn’t remember whether he lost consciousness, but other details remain clear. He recalls that he and his partner were on the ninth hole at Tamarack Golf Course in East Brunswick, N.J., and that “I had hit a pretty good tee shot.” He remembers that there was an off-duty policeman in the group behind them, who came and stabilized him while waiting for an ambulance to arrive. He remembers that other players behind his group were instructed to move ahead and play the hole as a par 3 until he could be removed.
He remembers “just screwing up everyone’s golf game. I remember feeling embarrassed, of all things.”
The last thing Wynne would want to do is spoil someone else’s golf experience. Growing up in a family of golfers, he inevitably caught the bug himself. “The more I played, the more I loved the game,” he says. It didn’t matter if he couldn’t find anyone else to play with – he wouldn’t hesitate to go out as a single. He’d play before going to his job as a restaurant manager. “I’d already have my sticks in my car.”
Today he belongs to an informal group of about 16 buddies who frequently play together. “We always honor the integrity of the game,” he says. “The more we play, the more we find guys calling penalties on themselves, just respecting the game.”
On the day of the accident, Wynne was playing with a close friend. He prefers not to identify him and doesn’t blame him for what happened, saying, “It was such a freak thing.” They no longer play together, he says, “but not because of what happened.” Wynne says he has tried to call on several occasions, but has gotten no response. He thinks his friend simply does not want to deal with the extreme awkwardness of the incident and its aftermath. “He was probably scared; he probably felt really guilty for almost killing his best friend,” Wynne says.
The road to recovery
Wynne was admitted to nearby Robert Wood Johnson University Hospital. He remembers being there less than a week, “and then they told me that I could go. They just had to make sure that my brain didn’t swell to a point where they had to do surgery.”
Although doctors told him full recovery would take a year, he went back to work in 4 ½ months. “And I played golf before then,” he said.
He was still participating in occupational and physical therapy to help with his gait (the left-side brain injury had affected his right side) and his speech. He didn’t even realize it had been affected, but people close to him did.
There was another issue as well – a strange one. He would find himself crying or laughing for no reason. At first he brushed it off as a possible side effect of a medication he had been prescribed for depression. Besides, he had other problems that seemed more pressing.
“The worst one was remembering anything,” he says. “I would literally get off a 45-minute phone call and if I didn’t cross that person off my list, I would hang up the phone and call them right back.”
The PBA became more of an issue when he began a relationship with his now-wife, Amie. “We’d be in an argument and he’d be kind of smirking at me, and I was getting really angry because I thought he was not taking it seriously,” Amie says. “So I would get mad at him.
“It took me saying ‘Why are you smirking at me? Why are you laughing at me? It’s not funny.’”
A ‘eureka’ moment
At the suggestion of one of his sisters, Wynne had begun seeing Fellus, an expert on brain injuries, and doing his own Internet research to try to discover if his laughing/crying condition had a name.
During one visit to Fellus’ office, Wynne happened to pick up a medical brochure. The subject: PBA. It was a “eureka” moment.
“I said, ‘You know, I have this.’
“We kind of laughed it off a little bit, and I don’t think until the next visit did he give me the full diagnostic on it.”
Fellus asked Wynne a series of “screening” questions designed to indicate the probability of his having PBA. “And lo and behold, he scored in the range that is highly suggestive for having PBA,” Fellus says.
“And that was really a lesson for me. … I thought I knew him pretty well.”
PBA, Fellus says, is often confused for depression. “Why? Because it occurs in all these neurologic conditions where we could all imagine that the people who have (them), it would be reasonable for them to be depressed.
“I’ve even had many patients who told me that their doctors said, ‘You’re depressed and you don’t know it.’ That’s disturbing to me.”
PBA is little known, Fellus says.
“We used to think it was quite rare. The old statistics in brain trauma quoted it as low as 5 percent. And yet newer studies, better-done studies with a better kind of screening tool, put it at over 50 percent. So it’s not rare. It’s hiding in plain sight. Patients hide it, doctors overlook it or ignore it, they downplay it. Even families downplay it,” Fellus says.
“And then patients learn to avoid situations that trigger it, so they become recluses, they become withdrawn, and it becomes a major impact on the quality of life.”
PBA is treatable, but not curable, Fellus adds. Wynne says the medication he takes – neither he nor Fellus wishes to identify it because of privacy considerations – keeps it in check.
“This is a remarkably effective treatment,” Fellus says. “It is rapidly effective. Over half the people who are treated for PBA have a complete remission of their episodes. And it’s a well-tolerated treatment.
“Is it a cure? There are very few cures in all of medicine, and there are even fewer cures in neurology. There’s management of a disease.”
‘Hindsight is 20-20'
Wynne can’t help but wonder if his PBA, before he knew what it was, held him back at work, perhaps costing him promotions. “Hindsight is 20-20,” he says, “but there are certain instances where I can go back, glancing at an executive meeting and things like that, (having had reactions) that aren’t appropriate at all.
“I know that I would have felt leery about putting someone like that in charge or giving them more responsibility if they’re not taking something serious.”
He would prefer to look forward, however. He hasn’t lost any of his enthusiasm for golf. His handicap, once as low as 15, ballooned after the accident, but it’s back down in the 18 range now. He can’t hit his driver as far as he used to, but his irons have remained consistent. The loss of feeling in his right hand affects his short game, but he makes do.
He gets “absolutely” as much enjoyment from the game as he did before, “if not more.” He’s passing along his passion to his 4-year-old son, Aeden, who’s already on his second set of clubs, having outgrown the first one. He and Amie also have a 1-year-old daughter, Kaelyn.
“He’s a highly motivated guy,” Fellus says. “He built a family after this, he continued to work and succeed at his job, against the odds.”
“I think the entire thing,” Wynne says, “has helped me to put everything in perspective.”
More information on PBA is available at PBAfacts.com.
