“ I cry (or sometimes laugh) out of nowhere,

all the time. I can’t seem to control it, and it’s not

the way I feel.”

Your Guide to Understanding PBA

If this sounds like you, and you have a neurologic condition or brain injury, you might have PseudoBulbar Affect (PBA). Learning about PBA is your first step in discovering how to manage the condition. Take a look through this

guide to find out more about PBA and what to ask your doctor.

Learn more about PBA

You’ve taken a great first step in finding out more about PBA

This kit is full of information to help you learn about the symptoms of PBA, assess your own symptoms more closely,

and have a productive and honest discussion with your doctor.

Be sure to fill out your information, and then print or email it to yourself so you can show it to your doctor.

Contents of the kit:

Your Guide to Understanding PseudoBulbar Affect (PBA)• What does PBA feel like?

• What exactly is PBA?

• Sometimes PBA can be mistaken for other conditions

• What’s the difference between PBA and Depression?

• Living with the symptoms of PBA

• Reminders for my next doctor’s appointment

Your short PBA quiz• Instructions

• Take the quiz—print and take to your doctor

Preparing for Your Doctor’s Visit • Tips for your visit

• Track your episodes

• Describe your episodes

• 5 questions for you and your doctor

What does PBA feel like?

These are real quotes from people who have PBA, and they’re not alone. While there are almost 2 million people in the US with neurologic conditions or traumatic brain injury

who have PBA, over 7 million people in the US have symptoms that suggest PBA.*

PBA episodes can be confusing, frustrating, and draw unwanted attention.

“ I’ve had crying episodes that were really upsetting.

I run a restaurant, and I’ve been in the middle of the

dining room with tears running down my face.”PBA episodes can make you cry and/or laugh

when it really doesn’t match how you feel—you look one way on the outside, but you feel

completely different on the inside.

“ Our son was invited to be a speaker at a prestigious

academic conference. I just burst out sobbing even though

inside I felt nothing but happiness and pride.”PBA episodes can cause embarrassing situations.

“ You’ll be somewhere and stand out.

You’re different and people look at you differently.”

* When considering patients with any of 6 common neurologic conditions associated with PBA, it is estimated that 37%, or an estimated 7.1 million Americans, have symptoms suggestive of PBA as defined by a CNS-LS (Center for Neurologic Study-Lability Scale) score ≥13, and 9.4% of patients, or an estimated 1.8 million Americans, with CNS-LS scores ≥21. The presence of PBA symptoms was defined as a CNS-LS score ≥13 and a more restrictive definition was also evaluated using CNS-LS ≥21. The CNS-LS was validated as a PBA screening tool in ALS and MS populations. A CNS-LS score ≥13 merits further diagnostic assessment.

Could your symptoms be a sign of PBA? The short PBA Quiz is a good place to start a conversation with your doctor.

What exactly is PBA?

PBA is a condition affecting people who have a neurologic condition or brain injury where they have episodes of crying and/or laughing that are:

Sudden

Frequent

Uncontrollable

…and that don’t match their feelings.

A person having a PBA crying spell may cry when they don’t feel sad or when they only feel a little bit sad.

Someone having a PBA laughing spell may laugh when they don’t feel amused or when they only feel a little bit amused.

“ Because I was crying AND laughing, I suspected there must be something more

than just depression going on.”

Sometimes PBA can be mistaken for other conditions

Because PBA always happens in addition to certain neurologic conditions or brain injury, its symptoms are often misunderstood and mistaken for conditions such as:

Depression

Bipolar disorder—A disorder associated with mood swings

Euphoria—Excessive laughter sometimes associated with conditions like multiple sclerosis (MS)

PTSD (post-traumatic stress disorder)—A disorder that follows a traumatic event, sometimes associated with conditions like traumatic brain injury (TBI)

Pain—A feeling sometimes communicated through crying, especially in people with Alzheimer’s disease

It’s possible to have these symptoms and conditions while having PBA, but each condition is different and needs to be diagnosed and managed by a doctor. That’s why it’s important to talk to your doctor and find out what might be causing your different symptoms.

* Formal diagnosis of PBA or depression can only be made by a qualified healthcare professional (HCP). These are not all of the diagnostic features of depression or PBA. PBA occurs in the context of a neurologic condition/injury affecting the brain and is not explained by other causes such as medication use.

What’s the difference between PBA and Depression?*

: You have sudden, frequent crying and/or laughing

Depression: You may or may not have crying†

†Tearfulness/crying is not a diagnostic hallmark for depression diagnosis.

: You also have a neurologic condition or brain injury

Depression: You may or may not have a neurologic condition

or brain injuryUNDERLYING CONDITION

HAHA

SIGNS

: Your crying and/or laughing spells are uncontrollable

Depression: You may have control over cryingCONTROL

: Your crying and/or laughing is exaggerated or doesn’t

match how you feel

Depression: Your crying matches how you feelMOOD

: Your crying and/or laughing lasts seconds to minutes

Depression: Crying is part of your depression that can last weeks

to monthsTIME

Learn more about the symptoms of PBA at PBAinfo.org/about-pba

Living with the symptoms of PBA

Sudden, frequent, uncontrollable crying or laughing can make things challenging at times. To make it a little easier to cope with uncontrollable crying or laughing episodes, here are a few ideas from doctors and patients:

TIP: Educate others.Your symptoms may take people around you by surprise. The more you help them understand PBA, the more they’ll know how to react.

TIP: Change body position.When you think you are about to laugh or cry, try switching things up. If you’re standing, try sitting down. If you’re sitting, try getting up and walking.

TIP: Take deep breaths.Breathe in and out slowly until the episode passes.

TIP: Relax.Try to massage or release tension from your forehead, neck, shoulders, jaw, and other muscle groups that may tense up while you’re having an episode.

These tips are general coping techniques and are not substitutes for medical advice from your doctor. Please talk to your doctor about more ways to cope with your symptoms.

Caring for someone with PBA symptoms? Get tips on helping them at PBAinfo.org

Reminders for my next doctor’s appointment:

Take the PBA quiz and bring it to my appointment

Record my crying and laughing episodes and bring the results with me

Ask my doctor about managing PBA symptoms

Write down any other questions for my doctor:

Print and bring your questions—and your results

from the PBA quiz—to your next appointment.

For more tips and tools for living with PBA, visit PBAinfo.org

The Center for Neurologic Study-Lability Scale (CNS-LS) was developed by healthcare professionals to identify and measure symptoms suggestive of PBA. It does not diagnose PBA and is not intended to substitute for professional medical assessment and/or advice. Please consult with your doctor. The CNS-LS has been validated in ALS and MS patients.

You can also take this quiz for an easy way to find out your score.

Your PBA Quiz

Take this 7-question quiz to help start the conversation with your doctor

If you have a neurologic condition or brain injury and are experiencing crying and/or laughing episodes that are

sudden, frequent, and uncontrollable, and that don’t match how you feel, it may be a sign of PseudoBulbar Affect (PBA).

The questions on the next page can help you and your doctor determine what your symptoms

mean and what the next steps might be.

Instructions:

1 Verify that you have one of the following conditions:

TBI (traumatic brain injury)

Alzheimer’s disease/dementia

Stroke

MS (multiple sclerosis)

ALS (Lou Gehrig’s disease)

Parkinson’s disease

2 Using the scale on the next page, write the number that best describes you during the past week. Add your total score.

3 Print and show your results to your doctor, using the discussion guide.

Take the PBA Quiz

In studies, scores of 13 or higher were more likely to suggest PBA; however, this score does not diagnose PBA, and lower or higher scores can occur in people with and without PBA. Your doctor will still need to determine if you have PBA.

Q1: There are times when I feel fine one minute, and

then I’ll become tearful the next over something

small or for no reason at all.

Q2: Others have told me that I seem to become amused very

easily or that I seem to become amused about things that

really aren’t funny.

Q3: I find myself crying very easily.

Q4: I find that even when I try to control my laughter,

I am often unable to do so.

Q5: There are times when I won’t be thinking of anything

happy or funny at all, but will suddenly be overcome by

funny or happy thoughts.

Q6: I find that even when I try to control my crying,

I am often unable to do so.

Q7: I find that I am easily overcome by laughter.

1 Applies never

2 Applies rarely

3 Applies occasionally

4 Applies frequently

5 Applies most of the time

For each question, select a number that describes you during the last week. Use the guide below to make your choice. When you are finished, add your numbers for your total score.

TOTAL SCORE:

It’s important to make sure you’re prepared for your visit, so you can have an informed and open conversation with your doctor. The tips and questions in this guide can help you discuss your symptoms and whether they might be a sign of PseudoBulbar Affect (PBA).

Tips for your visit

TIP: Give details. Let your doctor know things like:

How often you have a crying and/or laughing spell

Whether your spells match how you feel, which can help your doctor determine if they’re caused by depression, PBA, or something else

TIP: Come prepared.

Write down your questions beforehand

Bring a friend or family member to your appointment

Use this guide to describe your episodes. Print and bring it along to your appointment

TIP: Don’t be afraid to ask. The only bad questions are the ones you don’t ask.

TIP: Find out what’s next. PBA is a manageable condition. You and your doctor should discuss your options.

Preparing for Your Doctor’s Visit

Keeping a record of your episodes

It can be difficult remembering all of your episodes and details about them. Try tracking your episodes for a week and reviewing the results with your doctor during your next visit.

How many episodes did you have in the last week? Were they crying or laughing?(check the crying or laughing face for each episode)

Keeping a record of your episodes

Describe your episodes(check all that apply)

Sudden

Frequent

Uncontrollable

Exaggerated (crying or laughing more than you wanted to)

Didn’t match how you felt

Which words describe the impact of your episodes?(check all that seem appropriate)

Embarrassing

Confusing

Frustrating

Exposing

Discouraging

Like I looked completely different from how I felt

Since your symptoms started, how much have the following changed for you:

Not at all Somewhat A lot

Eating habits

Sleeping habits

Desire to participate in hobbies/activities

Overall activity level

Time spent socializing

How bothered are you by these episodes?

Not at all Somewhat A lot

5 questions for you and your doctor

Ask yourself

1 Do I have a neurologic condition or brain injury, and can I describe my crying or laughing episodes in any of the following ways?

Sudden

Frequent

Uncontrollable

Exaggerated (crying or laughing more than I wanted to)

Inappropriate or do not match what I am feeling inside

2 Are my unpredictable crying or laughing spells confusing or frustrating?

3 Have I let my doctor know I am experiencing these episodes and that they are bothering me?

Ask your doctor

4 Do you think I have the neurologic condition called PBA?

5 What can I do to manage my episodes?

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