I met my wife Amy in 2013 — about two or three years after her stroke. We’ve been married since December 2015.
I had never heard of pseudobulbar affect (PBA) before I met Amy. I think she had more symptoms before we met, but things have occurred since.
For those who aren’t familiar with the condition, the easiest way I can think to explain it is the uncontrollable urge to laugh or cry. This can cause awkward situations. People who don’t know about PBA might think it’s inappropriate to act that way.
Most of the time, it’s just the two of us when it happens — not like we’re at a dinner party or something. I remember one time when we were lying in bed cuddling. I was trying to fall asleep when Amy started laughing out of nowhere. At the time, I just thought it was funny. I mean, it was a bit of a shock, but she played it off by saying she was thinking of a joke I told earlier that evening. I wasn’t aware that it was her PBA.
When the crying part would happen, most of the time I just thought she was having a bad day. I would walk into the room and see she was crying. I’m not a paranoid person, but sometimes I wondered if it was my fault. Did I do something to upset her?
I was well aware she was recovering from a stroke and the psychological and emotional effects that had on her. I didn’t realize it was uncontrollable. Once we had talked about it and she told me what she goes through, I thought back to a few situations where she would get really sad and cry all of a sudden, and thought, “Oh, that’s why that happened.”
Once I knew her reactions weren’t prompted by anything I had done or said, I felt a little more comfortable. Sometimes we would talk about it, but lately, I let her work through it herself. She feels more comfortable just riding it out and moving on. We don’t need to discuss everything. I’ll give her space and let her know I’m in the other room if she needs anything. That seems to work.
To be a caregiver of someone living with PBA, you have to be an empathetic person. I realize that it isn’t about me, it’s about what she’s going through. As hard as it is for me, it’s harder for her. You have to put your anxiety and concerns aside for a bit and be there for your loved one. I’m not perfect, and I do admit that sometimes it can be a bit frustrating, but PBA doesn’t affect the quality of our relationship. It hasn’t been a problem.
If someone had just broken their leg, you wouldn’t tell them to get up and walk on it. It’s the same with an illness like this. The person can’t just snap their fingers and be OK. PBA needs to be acknowledged just as a physical injury would be and you should be as supportive.
I’ve always been an understanding person, but being with Amy has made me even more empathetic and sensitive to others. It’s opened my eyes to what it means to live with an illness like PBA and how it can affect someone’s day-to-day life.
Patrick Elder is from Pittsburgh, PA and has spent his career in medical research and public service. Most recently, he worked as a compliance specialist for Pittsburgh’s housing authority. Patrick and Amy married in 2015 and relocated to St. Petersburg, FL last summer.