Pseudobulbar Resources You Can Use

By Susan Connors, President and CEO, Brain Injury Association of America

This fall, the Brain Injury Association of America (BIAA) released three new resources for individuals living with pseudobulbar affect (PBA). PBA is a neurological condition secondary to traumatic brain injury and stroke that causes sudden, frequent, uncontrollable crying, and/or laughing that does not match how the person feels. PBA is often misdiagnosed. It may be hard to find a clinician who understands PBA or to get insurance coverage for the right treatment. BIAA’s new resources address these issues.

The Association published its Pseudobulbar Affect Self- Advocacy Toolkit in September. The toolkit, a booklet presented in PDF format, defines PBA, describes the signs and symptoms, offers suggestions for talking with healthcare providers, explains treatment options, and includes tips and tricks for advocating with insurance companies. The tools in the kit include a PBA episode journal, a self-administered Center for Neurology Study- Lability Scale (CNS-LS), and a sample complaint letter to send to your state’s insurance commissioner.

Former employee William Dane, who authored the toolkit, presented an overview of its contents during a Carolyn Rocchio Caregivers Webinar held Oct. 18, 2022. The webinar, Taking Charge: Self-Advocacy and Brain Injury, featured suggestions for ensuring individuals with brain injury or family members can advocate for the highest level of care possible. To view a recorded version of the webinar, visit: biausa.org/pba-webinar.

BIAA’s Volunteer Medical Director Emeritus Greg O’Shanick, M.D., joined BIAA’s Director of Consumer Services Greg Ayotte in a Facebook Live event on Oct. 21, 2022. During the highly informative conversation, O’Shanick emphasized that PBA is not a psychiatric disorder but a neurologic disorder. He explained that PBA stems from a change in the brain’s ability to send signals back and forth to the cerebellum. Signal disruptions are visible when a person’s hands shake as he reaches for an object. Similarly, a person who experiences PBA has difficulty modulating or smoothing out emotions. Minor feelings of depression, anger, joy, or irritability are exaggerated.

O’Shanick reported that PBA has been diagnosed at some point after injury in 48% of TBI survivors and 28% of stroke survivors. He explained that adolescents who sustain concussions may experience PBA in the first few weeks after injury. In young people, PBA may be misdiagnosed as “teenage emotionality.” He explained that healthy habits – good nutrition, adequate sleep, appropriate exercise, and plenty of hydration – can help contain a PBA episode but doing so requires massive amounts of cognitive energy. The episodes can be emotionally isolating and difficult to manage.

O’Shanick explained, “Nobody has ever been able to control PBA by being told to do so.” He suggested that changing the environment or removing the trigger might help with management. He urged individuals to take the CNS-LS scale and talk with a clinician to confirm a PBA diagnosis and develop a course of treatment. He suggested talking with a board-certified brain injury medicine physician, neurologist, or physiatrist.

One attendee exclaimed, “Great information! Thank you. We are at Craig Hospital with our son who has a TBI. I love soaking up as much info as possible!” Readers can view the Facebook conversation at facebook.com/BrainInjuryAssociationofAmerica.

In December, BIAA update the PBA Voices website with stories of individuals who experience PBA. Visit PBAvoices.org for more information.

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This article originally appeared in Volume 16, Issue 4 of THE Challenge! published in 2022.