Caregiving for PBA

You're a caregiver.

When someone you love may have Pseudobulbar Affect (PBA), you’re in a special position—the position to make an impact.

Amy, patient with Pseudobulbar Affect (PBA) and her friend and caregiver Laura, talking over coffee
Amy, patient with Pseudobulbar Affect (PBA) and her friend and caregiver Laura, talking over coffee
Laura has known Amy since they were 18. And as her longtime friend, Laura knew Amy wouldn’t give up until she got answers about her PBA symptoms.
Read Their Story

Laura and Amy are a real caregiver and patient and have been compensated.

What is PBA?

Pseudobulbar Affect (PBA) is a medical condition causing sudden, frequent, uncontrollable crying and/or laughing that doesn't match how the person feels. Because PBA can happen with certain neurologic conditions or brain injury, its symptoms are often misunderstood.

Marilyn, a caregiver to her husband with Pseudobulbar Affect (PBA) walking through a door
Marilyn, a caregiver to her husband with Pseudobulbar Affect (PBA) walking through a door
Marilyn is there for Jim in sickness and in health, including when he has a crying episode in public.
Read Their Story

Marilyn and Jim are a real caregiver and patient and have been compensated.

Understand the impact.

Observe the impact PBA episodes have on your loved one’s life.

  • Are they avoiding social events?
  • Are they not going out in public as much as they used to?
  • Do they suddenly dread going to work?
  • Have their daily routines changed since the episodes started?
Share details with their healthcare provider. It could be critical to making an accurate PBA diagnosis.

What small actions can you take to make a big difference?

Liyah, a caregiver to her mother with Pseudobulbar Affect (PBA)
Liyah, a caregiver to her mother with Pseudobulbar Affect (PBA)

Liyah is a real caregiver and has been compensated.

Learn

all you can about PBA.

  • Answer 7 short questions about your loved one’s crying and/or laughing episodes here: take the PBA Quiz.
  • Encourage your loved one to take the PBA Quiz to see if they are eligible for the PBA Nurse Talk* program, where they can speak with a registered nurse to learn more about PBA and discuss their quiz results. Caregivers are not eligible to speak with a registered nurse.
  • Join Our PBA Support Group on Facebook, where you can meet people living with or affected by PBA.
  • Learn more with our PBA FAQs

Advocate

for your loved one’s health care.

  • Encourage your loved one to make an appointment with a healthcare provider.
  • If you’re able, go to healthcare appointments with your loved one.
  • Discuss with a healthcare provider the impact your loved one’s episodes have had on their daily routines.
  • If you can’t accompany them to their appointment, help write down notes for them to share with the healthcare provider so they can advocate for themselves.

Support

your loved one in social situations.

  • Make a plan together about how to handle a crying and/or laughing episode ahead of time.
  • Find a private place to take a break if they feel an episode coming on.
  • Take the lead in the situation and leave with your loved one if it becomes too much for them.
  • Let them know you are not embarrassed by their crying and/or laughing episodes.

* PBA Nurse Talk is sponsored by Avanir Pharmaceuticals, Inc., which is committed to supporting those who may be suffering from PBA. This program is offered at no cost to those eligible, does not require health insurance, and does not replace speaking with a healthcare provider – only a healthcare provider can diagnose PBA. PBA Nurse Talk conversations with a nurse will remain completely confidential. PBA Nurse Talk is only available to people experiencing uncontrollable crying and/or laughing, not their caregivers.

Health care professional and patient
Health care professional and patient

Make an appointment with their health care provider.

Neurologists, psychiatrists, internists, neuropsychiatrists, and physiatrists are types of healthcare providers who may be able to help identify PBA symptoms and diagnose properly.

Remember: PBA can be managed, but a healthcare provider needs to make the diagnosis.

Has your loved one been diagnosed with PBA?

Download the “I Have PBA” card and give it to your loved one to keep with them. They can take control of social situations by sharing it with the people they're with so everyone knows what to expect if they have an episode.

Get the “I Have PBA” Card
I Have PBA pocket card

Meet Our Caregivers

Each of our real caregivers play an important role in the life of their loved one. Read their stories below.

Have your own caregiver story?

If you’re interested in sharing your story as a caregiver, learn how you can become a PBA Ambassador.

Learn more

All participants are real caregivers and have been compensated.

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.”

Marilyn, a caregiver to her husband with Pseudobulbar Affect (PBA)
Marilyn, a caregiver to her husband with Pseudobulbar Affect (PBA)

I think at first he thought it was embarrassing for me, and I told him it’s not.


Marilyn and Jim are a real caregiver and patient and have been compensated.

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.

Amy, patient with Pseudobulbar Affect (PBA) and her friend and caregiver Laura
Amy, patient with Pseudobulbar Affect (PBA) and her friend and caregiver Laura

We didn’t understand it was a separate disorder.


Laura and Amy are a real caregiver and patient and have been compensated.

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."

Sequena, a patient with Pseudobulbar Affect (PBA), and her daughter Liyah
Sequena, a patient with Pseudobulbar Affect (PBA), and her daughter Liyah

It was hard to understand why she was acting so different.


Liyah and Sequena are a real caregiver and patient and have been compensated.

MLR-PBA-US-0763-0822