caregiver.

The Partner

Marilyn and her husband Jim had been married for three weeks when he had two strokes in 2013. That’s when she became a caregiver. “Jim’s symptoms began after that, uncontrollable crying or laughing—he had never done that before,” says Marilyn. She remembers him having symptoms just two or three days after his stroke, while he was still in his hospital bed. “Our friends came to visit, and he had some pretty bad episodes, so we knew something was wrong.”

Jim’s doctors were familiar with PBA, so they were able to explain to him what he had. “Having a name put on the issue gave me hope. When you cannot put a name on something, you feel like you’re in limbo”

Marilyn helps Jim by being accepting and supportive of his condition, which has helped him remain social. “He continues to go to social activities, such as shopping, going to church, being out with friends. He feels bad when it happens. I think at first, he thought it was embarrassing for me and I told him it’s not. It’s improved so much.”

The Cheerleader

The first thing Laura remembers about Amy when they met at 18 was that she could dance like Axl Rose. “I thought she was the coolest chick ever.” Though they now live in different states, they’ve been friends ever since.

Laura remembers getting the news of Amy’s big accident. “It was terrible, scary,” she says.

Soon after, when Amy started not being able to control her laughing and crying, they would talk about it on the phone. “We both thought it was part of her brain injury. We didn’t understand it was a separate disorder,” Laura says. It wasn’t until Amy saw a PBA awareness commercial that she had a name for it.

“She called me one day and said, ‘I found out what’s going on, it’s PBA,” Laura says. She started doing her own research, “and everything I read was her down to a T.” Amy was able to get the support of her doctor, and the help she needed.

Laura has been a consistent support for Amy though phone calls, texts, and frequent visits. “She’s my best friend, and I’m five hours older than her, so she’s got to take care of me,” says Amy.

The Champion

When Lori’s husband started laughing and crying 15 years after his Parkinson’s diagnosis, she thought maybe he was just an emotional person. It took a while to figure out he also has PBA.

“It was a little crying here or there, maybe from a commercial, or when the grandkids walked in,” Lori says. Then, it was constant. Explaining it to the little ones wasn’t easy. “Papa just cries sometimes,” she’d tell them. Then they’d say, “Oh Papa, oh Papa.” And then he would try to help them feel better by saying he was OK. “It was hard on everyone,” she says.

At first his doctor suspected depression. But Lori and her husband both knew that wasn’t it. “He was a little sad here or there, but as quick as it came, that’s as quick as it stopped.”

“I had to be his advocate.” She talked further to the doctor about her husband’s experiences. The conversation helped him to diagnose her husband with PBA.

Now her favorite moments are when they’re together eating dinner, or traveling or going out socially, “which was hard before his diagnosis,” she says. “But now it’s a lot easier.”