While sitting having lunch with a friend, a woman begins laughing hysterically, and no one seems to know why.
While playing cards with his friends, a man breaks into tears in the middle of the game, and everyone assumes he's depressed over something.
While happily dancing with her sweetheart, an elderly woman has a sudden outburst of anger, fighting the spouse she was hugging only moments before.
All of these people are neurological patients, and all these
scenarios illustrate a phenomenon that happens in about 10% of MS
sufferers, and a similar number of Alzheimer's and dementia patients.
In all it is estimated to affect approximately 2 million people
worldwide. Called the Pseudobulbar Affect (PBA), the
condition is often overlooked by family, friends and physicians when
they assume that the inappropriate behavior is not a symptom of their
disease, but instead a symptom of emotional lability or even depression.
PBA is also sometimes called Involuntary Emotional Expression Disorder (IEED).
PBA can actually be a symptom of many different neurological conditions. This week the ABC television show Off the Map episode Es Un Milagro,
a patient with a pressure inside her skull. She began laughing
hysterically and at first was seen as happy she had survived a dangerous
surgery. When the condition continued it was recognized as a symptom
that something very wrong was actually happening in her brain.
In MS and AD patients, PBA is usually a symptom of advanced disease,
but not always. It can happen at any stage. Damage is done within the
pathways that control expression, resulting in inappropriate reactions.
Patients are usually aware that their emotions are not on par with
their physical reaction, yet are powerless to control it. Often these
episodes do have what starts as a minor emotional trigger far less than
the reaction would indicate.
PBA is difficult to diagnose in anyone if the patient doesn't tell
their physicians or caregivers that something seems wrong. This
implies choice on the part of the patient. For some very advanced
patients, this is almost impossible.
MS, AD and other neurological patients may have extreme difficulty
communicating due to their diseases/conditions, making diagnosis more
about educated assumptions and guesswork. It's all too common for
physicians, caregivers etc to simply assume the patient is depressed and
not acting appropriately. After-all, depression in chronic diseases is
indeed a real problem. It's important not to use the diagnosis of
depression as a trashcan diagnosis however - throwing the symptom into
the diagnostic trash bin because it is handy. This diagnosis often
takes work on the part of all involved. In patients who do experience
co-morbid depression, getting an appropriate diagnosis may be nearly
impossible without an exquisitely intuitive physician. This makes
awareness about the condition super important for caregivers and loved
ones of these patients.
Researchers don't know exactly what causes PDA, but assume that it
involves the brain's physiology as well as neurotransmitters. What they
do understand is that the symptoms result from the loss of control in
the cortical and subcortical pathways that lead to the brain stem.
Treatment may be possible and often includes the use of low doses of
tricyclic antidepressant medicines like amitriptyline or SSRI's.
However, the best results seem to be coming from a medicine called
Nuedexta which was just given FDA approval in January 2011. The active
ingredient in this compound is dextromethorphan - an OTC cough
suppressant - which is thought to help regulate excitatory
neurotransmitters, especially in patients whose primary symptom is
crying. The dextromethorphan is combined in this case with an enzyme
called quinidine that increases the bioavailability of the
PBA is considered widely to be under-recognized and as a result
under-treated. Doctors often don't think of it when considering their
patients. This adds to the burden of the patient and caregiver to be
proactive in recognizing and describing, and insisting upon appropriate
treatment for the sufferer.
I think this is an important topic, but I haven't seen much in either the MS or AD communities in which I am a member. Do you regularly talk about PBA? Do you think it's important?
What can we do to make this widely known and discussed in these
communities? Will you share this post in order to help to that end?