Understanding Emotional Changes of PBA in ALS

Kellie Branch-Dircks, MSW, LCSW
Care Services Coordinator – Social Worker, ALS United Greater Chicago

ALS is a disease that affects the nerves controlling movement. But did you know it can also affect emotions and thinking? These changes can be just as challenging as the physical symptoms.

Uncontrollable Emotions (Pseudobulbar Affect – PBA)

Some people with ALS experience sudden, strong emotions that they can’t control. This might mean laughing or crying at unexpected times. It happens because ALS affects the brain’s ability to manage emotions. This is called pseudobulbar affect (PBA), and it can make social situations difficult or frustrating. PBA can feel like being on an emotional rollercoaster all the time.

PBA and FTD (Frontal Temporal Dementia) are Not the Same

People with ALS can sometimes have changes in their emotions and thinking. Two common conditions that affect the brain in ALS are Pseudobulbar Affect (PBA) and Frontotemporal Dementia (FTD). They may seem similar, but they are very different. In short, PBA = Laughing or crying when you don’t mean to and FTD = Trouble thinking, speaking, and making decisions.

How Are PBA and FTD Different?

Why Do These Changes Happen?

These emotional and thinking changes happen because ALS can affect the frontal lobe of the brain, which controls emotions and decision-making. These symptoms can significantly affect a person’s quality of life, making everyday tasks, relationships, and communication more challenging.

New Research on Emotional Changes and ALS Progression

A recent study published in the journal Aging and Disease looked at over 1,100 people with ALS in different countries. The study found that people who had emotional lability (uncontrollable emotions) when ALS started tended to have a faster disease progression. This was true no matter their age, gender, or where ALS first appeared in their body. The study suggests that emotional lability might be linked to a faster progression of the disease. (Doehnert et al., 2020)

Managing Emotional Changes

Doctors can diagnose these changes through observation and discussion. While there is no cure, there are ways to help:

• Medications: Some drugs can help manage uncontrollable emotions.
• Therapy and Support: Talking to a counselor or joining a support group can help with coping strategies.
• Family and Friends: Having a strong support system can make a big difference.

Your healthcare provider can assess for PBA, FTD, or both. If you notice these changes or have concerns, it’s important to talk to a doctor.

Recognizing and addressing emotional lability and cognitive changes in ALS is essential for improving the quality of life for those affected. By understanding these non-motor symptoms, caregivers, healthcare providers, and loved ones can offer better support, ensuring that individuals with ALS receive the compassionate care they deserve.