Caregiving for PBA

The Cheerleader

Amy has PBA. Laura is her friend.

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 primary care physician, 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 Partner

Jim has PBA. Marilyn is his spouse.

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 neurosurgeon and psychiatrist 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.”

The Cheerleader

Amy has PBA. Laura is her friend.

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 primary care physician, 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 Sidekick

Sequena has PBA. Liyah is her daughter.

Liyah was only 10 years old when her mom Sequena had a stroke. Sequena suffered from a stroke at the age of 29, after giving birth to Liyah's youngest sibling. Soon after, Sequena began experiencing uncontrollable crying episodes. "All of a sudden, my mom's sick, and we've got a new baby in the house," Liyah said. "I was a kid and it was hard to understand why she was acting so different."

When her mom was first diagnosed with PBA, Liyah helped out by watching her younger brother while her mom and dad were at the hospital. As time went by and Liyah got older, she helped her dad take care of her mom by driving her to healthcare appointments when he wasn't able to. "Since I was at the doctor's with her sometimes, I started to put the pieces together myself."

As the oldest of three, Liyah also supported her mom by helping take care of her two younger siblings. "It definitely makes me appreciate my mom and how much she does." Liyah is currently away at college but will always have a special connection with her mom. ''I've been there since day one."