Your Guide to Understanding PBA

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Your Guide to Understanding PBA 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. 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. Could your symptoms be a sign of PBA? The short PBA Quiz is a good place to start a conversation with your doctor. 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. Because I was crying AND laughing, I suspected“ there must be something more than just depression going on.” What’s the difference between PBA and Depression?* : You also have a neurologic condition or brain injury Depression: You may or may not have a neurologic condition UNDERLYING CONDITION or brain injury HA : You have sudden, frequent crying and/or laughing HA † Depression: You may or may not have crying SIGNS †Tearfulness/crying is not a diagnostic hallmark for depression diagnosis. : Your crying and/or laughing spells are uncontrollable Depression: You may have control over crying CONTROL : Your crying and/or laughing is exaggerated or doesn’t match how you feel MOOD Depression: Your crying matches how you feel : Your crying and/or laughing lasts seconds to minutes Depression: Crying is part of your depression that can last weeks TIME to months * 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. 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 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. 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. Take the PBA Quiz 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. 1 Applies never 2 Applies rarely 3 Applies occasionally 4 Applies frequently 5 Applies most of the time 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.
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