I had a stroke at the age of 30. Yes, the age of 30. It’s not uncommon for young adults to have a stroke, even though people don’t often talk about it.
After the stroke, everything changed. One of the most devastating things was being diagnosed with pseudobulbar affect (PBA). PBA might be the strangest thing I’ve ever experienced and hopefully will ever experience.
If you’re not familiar with PBA, it’s when how you’re acting doesn’t match how you’re feeling. For instance, laughing at a funeral when everyone else is crying, and you’re sad.
Here are four ways PBA affected my life in the years following my stroke.
1. Uncontrollable crying
There was a period when I burst into tears every time I talked about my stroke. I wasn’t sad; I just couldn’t control the expression on my face. Now, seven years later, that doesn’t happen anymore. I’m able to talk about my stroke without crying.
2. Difficulty communicating
PBA affected my ability to communicate. Words would come out of my mouth that didn’t reflect what I was feeling or thinking. For the first couple of years, I remember always thanking people when they talked to me — even if it was just about the weather. I knew it didn’t make sense to respond that way, but it came out of my mouth regardless. Why my brain chose the phrase “thank you” is anyone’s guess.
3. Unprovoked aggression
People would call me mean sometimes, but it wasn’t me — it was the PBA. A scenario I distinctly remember is when I told my physical therapist to “shut up” while in a session. I really like her. She didn’t say or do anything to warrant my outburst. It just came out of my mouth.
4. Feelings of isolation
When you have PBA, it can seem as though your personality has changed. It’s almost as if PBA knows what will embarrass you the most and causes your body to say or do that thing. Since most people don’t know or understand the effects PBA can have on you, they may misinterpret your symptoms as changes in your character. This may leave you feeling very isolated and misunderstood.
In my case, no one tried to understand what was happening to me. I hope that by writing about it, I can inspire people to educate themselves about the condition and be sensitive to those living with it.
Things have gotten exponentially better for me over the past seven years. However, my PBA was the result of a non-progressive disease. Unfortunately, people who get PBA because of a progressive neurological illness like multiple sclerosis (MS) aren’t likely to see improvements in their PBA without medication.
If you’re living with PBA, you will say and do things that you don’t understand. Those around you won’t recognize such behavior as a symptom of your PBA, and that will be frustrating. It’s understandable if others don’t know much about PBA, but it’s important that they educate themselves about the condition and learn how to be sensitive to what you’re experiencing.
Amy had a massive stroke at the age of 30, and her life changed dramatically. Since her stroke, she is back to work as a physical therapist in a compliance/quality assurance role. She has chronicled her recovery experience, intermingled with physical therapy knowledge, on her blog.