The StrokeNet site is an excellent source of information.
Go to: www.strokenetwork.org
To contact David email to: newsletter@strokenetwork.org
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By David Wasielewski
To contact David email to: newsletter@strokenetwork.org
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By David Wasielewski
Pseudo Bulbar Affect Disorder and Stroke Survivors
Many stroke survivors deal with the obvious challenges that stroke presents. Loosing physical use of one or more body parts, the ability to speak and or understand language. These losses are all readily apparent to caregivers and social contacts. But there are also a number of less obvious challenges that confront some survivors. One of those is Pseudo Bulbar Affect Disorder (PBA).
The symptoms of PBA are inappropriate outward or physical responses to emotions that the individual experiences. An affect is the physical manifestation of an emotion. The error in the affect defines the disorder. PBA has a range of effects and each survivor has their own experience. In its most severe case the survivor will display an affect that is opposite of the emotion experienced. A person hearing a funny joke may begin to cry, or a death in the family will bring the survivor to a hearty laugh.
In other cases the physical display varies in degree to what is appropriate or normal. The accidental breaking of a dinner plate might cause the survivor to cry uncontrollably or a slightly funny comment might cause prolonged loud laughter. The degree of the response is not appropriate. There is no difference between being slightly sad and uncontrollable crying. The response is always extreme. The inability to manage one’s emotional responses in day to day activities can be quite challenging for the survivor.
Not knowing what may cause an outbreak of crying or laughter may cause the survivor to isolate themselves to avoid embarrassment. In some extreme cases the survivor might even lack the personal insight to recognize that this is happening. It is also uncomfortable for caregivers and other social contacts. Others who do not fully understand the situation will tend to avoid the survivor in order to eliminate the uncomfortable situations. There is the perception that the survivor is mentally unbalanced. In any case, this invisible disability tends to isolate the survivor and make care and support more difficult than it already is.
I was stunned when I initially experienced this disorder. When I woke up in the hospital after my stroke I found myself crying uncontrollably when speaking to my family. As I expressed my concerns to the nurse she carefully explained that the overly emotional response was a result of the stroke. While this explained why I was so emotional she offered no advice as to how I might deal with the condition. I needed to develop some strategies on my own.
Over time (years) I have learned how to partially manage my reactions to events. If I’m aware that my emotional responses might be inappropriate in certain situations I will simply withdraw. I find myself leaving funerals when overcome. I often avoid telling funny stories or jokes as my laughter prevents me from completing the tale. If a situation is unavoidable I will try to explain the condition so others can understand.
The condition is particularly frustrating when I am involved in serious discussions. In situations where I should be mildly angry or upset my body reacts with laughter. This makes such discussions difficult for me, the person I’m dealing with and continuing on almost impossible. Often I need to withdraw instead of continuing on, leaving the topic unresolved.
So what is the survivor with PBA to do? Fortunately, there are some strategies to practice. When one feels an event coming on the survivor needs to find thoughts to distract him/herself from the topic. Imagining oneself in a calm place can be effective. Counting slowly to ten can distract the survivor from an emotional response. Deep, slow breathing often helps alleviate one’s reaction. Recently, several medications have come to the markets that are designed to manage PBA. Nuedexta is marketed for the condition. More information is available at: http://www.stroke.org/site/PageServer?pagename=PBA
It is most important for the survivor to identify the condition and explain it to friends, family and caregivers. This may not prevent the uncontrolled emotional response but it will allow others to recognize this somewhat unusual behavior as part of the effects of the stroke. Recognizing this as a condition and helping the survivor deal with it can help them overcome the stigma of PBA as they work to maintain their social relationships during their recovery.
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