Pseudobulbar Affect

Hi everyone!  I needed to come back to the blog and write a post about this because I’ve been talking a lot about it and trying to explain it to my hubby in the last few days.  It’s oh so important and can quite frankly ruin relationships. And as I’ve been reading about it lately it seems it’s way under diagnosed and most families sweep it under the rug and don’t try to understand it. Mine sure as hell didn’t. My family was only concerned with THEIR feelings and how this affected THEM.  Not at all how this terrible, devastating, tragic, horrible thing affected ME and my life.  My immediate family members and SO at the time couldn’t have been more self-involved if they tried.

It’s called Pseudobulbar Affect or PBA for short. It’s when you have episodes of uncontrollable crying or laughing or anger or just saying bizarre things. It’s an emotional disconnect when what shows on your face or how you emote or what you say is completely opposite of what’s in your head. It might be one of the weirdest things that I’ve experienced after the stroke. At times my words didn’t at all match what was in my head. A lot of people have it after a stroke, not everyone.  Five years later and I’m still very much struggling with it. It’s utterly impossible for a normal person to understand this, it’s so very weird. The most you can do is provide reading materials to people and hope that they read it and try to understand, as my husband is trying.

For the first year or two after the stroke, it was unbelievably severe and intense that I literally couldn’t speak without bursting into tears. I could be speaking about a TV show and just start sobbing. Now, it’s mostly the episodes of intense anger that I’m dealing with. Anger sometimes over stupid little things that wouldn’t at all bother someone else.  Because of this, I tend to socially isolate myself, remove all negativity and drama from my life and I choose only to be around a select few people that make me feel good. This is because I’m terrified of how I will react.

PBA is uncontrollable. It’s totally beyond your control. Therapy can give you coping mechanisms but talking about it ad nauseum won’t make it go away, nor will medicine. You literally cannot control your emotions.

Here’s some good reading material  that I’ve found on it in the last few days….

PBA 1

PBA 2

PBA 3

Written by Mrs. Patrick Elder

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Categories: Brain stuff, Stroke stuff

Tags: , , ,

10 replies

  1. Congrats, Mrs. Elder 😊

  2. Congrats Amy! Glad to see you back. Yes, PBA is a witch. I’ve had since my stroke. I was diagnosed for months with severe depression, but finally my neurologist figured it out. There is a new drug on the market which helps you gain control of the outbursts. It is contraindicated with one of my heart meds so I can’t take it. I’ve just mostly done chi focus and meditation..I’ve also blogged about it several times.

    For most the Affect is a one or other. For me, it’s all three. I had a fit of laughter at my husband’s funeral. Tear up watching a boxing match. And, be drive insane with anger over stupid stuff like you said the sky was blue. It’s nuts, but a VERY REAL medical condition.

    There is a documentary coming out this year about it. I’ve been very involve with the PBA project since the beginning. I was invited to the premiere in CA and next week fly to DC to rub elbows with Congress about. Have your DH take a look at http://www.pbafilm.com, Pics say a thousand words.

    • I was invited to that too but couldn’t go, have you seen it?

      • I watched in CA. now I’m just on the Q&A panel and promotion side of this release. Very well done film. I couldn’t participate with the filming because my DH was so ill, so I only did research and fact finding for the set up.

        They are already planning another documentary on PBA and trying to source additional funding. I was asked to be filmed in the second one now that my DH has died. But, I’d rather be behind the scene rather than in front of the camera especially with my aphasia issues. These make a nice whirlwind couple of days trips for me and they pick up the tab about every other month.

  3. Even w your name change, you get to put all those letters after your name, Dr. Elder.

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