Pseudobulbar affect—also known as PBA, labile affect, or emotional incontinence—takes a major toll on the mental and emotional health of those it affects. PBA causes uncontrollable emotional episodes (usually forced laughing or crying) that may not be appropriate for the situation. As such, many people with PBA retreat from public life. Building a PBA support network is a strong ally in restoring patients’ social well-being. 

Finding Those Who Walk in Your Shoes: PBA Support Groups

A good starting point for building your PBA support network is ask your doctor about support networks in your area that may be valuable for you.

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Another option is to explore the advocacy organizations for your neurologic condition. Pseudobulbar affect develops secondary to a neurologic condition (eg, stroke, multiple sclerosis, or Parkinson’s disease) or brain injury. Individual advocacy organizations for these conditions can help connect you to support groups in your area, but few groups are focused exclusively on PBA. However, the Brain Injury Association of America has established PBA Voices, which is a community designed for people with PBA.

In-person support groups are a great way to meet people near you who understand your day-to-day challenges, but they’re not practical for everyone. For some people—including Delanie Stephenson, who’s had pseudobulbar affect since 2012 after suffering a stroke, finding an in-person support group isn’t so easy.

“After my stroke, I was told to go see a stroke support group, but they were all so far away because I live in the country,” Stephenson said. “So, I turned to Facebook, where there seemed to be a million stroke support groups.”

Out of the many online stroke support groups, Stephenson found 1 group dedicated to PBA. She said it was small, and the members weren’t very active. Thus, not much information was being shared.

So, Stephenson started some conversations: “Hey, I’ve got these laughing or crying spells, what’s going on?” It wasn’t long before several people chimed in with similar stories and shared experiences.

Suddenly, the group became a big asset.

“Through this support group I’ve been able to connect with other people who have PBA, and it’s been really cool to have friendships with people all over the world who have PBA and are going through lots of same things that I am,” Stephenson said.

In addition to the PBA Facebook group, Stephenson also belonged to a stroke survivors group called Stroke Warriors, which was established by Nancy Higginbottom. Higginbottom developed PBA after her second stroke in 2015. Higginbottom talks openly about PBA on social media and to her family and friends. She said talking about it is the best way to build your support network.

“Preserving your social well-being with PBA is simple: Talk about it. Explain it,” Higginbottom said. “Maybe four friends won’t understand, but the fifth one will.”

Higginbottom noted that in-person support groups for primary neurologic conditions—stroke, in her case—are active in every state, and those are good places to talk about PBA. In those meetings, “you might even help someone else who suffers from it and had no idea it’s a thing!”

Higginbottom is a big proponent of online support groups, too.

“Facebook has a lot of support groups where you will find others who ‘get it,’” Higginbottom said. “There is something so comforting about telling your story and having 20 people respond with ‘Me, too!’ You’re not alone. You’re not crazy. There’s help for you.” 

Find Support, But Don’t Forget to Support Yourself

Finding a support network of people who understand what you’re going through is an essential part of living better with PBA. But Stephenson noted that it’s also important to be kind to yourself. She said people with PBA can’t control their condition, and they shouldn’t be ashamed of it.

“Don’t be apologetic about it—be matter of fact,” Stephenson said. Tell people, ‘I have this condition called PBA,’ and explain it to them. Don’t hide and be afraid of going out into public.”

In the first few years after her PBA diagnosis, Stephenson said she was scared to go to the grocery store because she worried about what people thought if an episode occurred. Now, she said she knows she doesn’t have to be defined by PBA—it’s just a part of who she is.

Stephenson compared the fear of going out to the fear of getting a shot at the doctor’s office.

“You know it’s going to hurt, and you’re more scared of how painful the shot will be then how much it actually hurts,” Stephenson said. “It gets easier the more you do it. Remember, you’re watching people more than people are watching you. We’re so worried about what people will say about us. But really, they don’t care what we look like or what we’re doing, or even if we make a scene or episode. They have their own issues, problems, and families—they won’t remember if we have a laughing or crying spell.

For those looking for ways to get out in public more, Stephenson recommended going somewhere less populated during the middle of a weekday (while many people are at work or school). She also suggested going alone, if you feel comfortable, so you don’t feel as stressed.

“My PBA is triggered more when I’m with people,” Stephenson said. “But when I am by myself, it’s not triggered as much.” 

Living with PBA: Making It a Part, Not the Whole

Support groups specific to pseudobulbar affect are not as common as its associated primary neurological conditions (eg, stroke, multiple sclerosis, traumatic brain injury). But as the medical community learns more about PBA, it will be easier for those with the condition to achieve a proper diagnosis, and proper treatment. And more PBA support groups may pop up to meet that need.

For Stephenson, the opportunity to discuss her PBA fears, thoughts, and day-to-day issues with those who “get it” is a reminder that she’s not facing this disorder alone.

“In any situation, it helps to know that the feelings you’re feeling are not crazy, that you’re not crazy,” Stephenson said. “It’s nice to help each other out from medication to recommending counselors to suggesting getting out of house. It’s just the social network of it all—without it, it would be hard because you would feel alone.”

Last Updated: Jan 14, 2019