THE EMOTIONAL ASPECT – No. 6

I wrote early on that one of the symptoms of this disease can be an effect on a certain area of the brain which results in uncontrollable, and often inappropriate, crying and/or laughter. I want to include here an excerpt from a recent study sent to me by someone I know who was a participant in this study. I believe it helps explain the cause of this behaviour and gives some insight into its effect on people living with this disease.

This study was carried out in partnership with Avanir Pharmaceuticals, who are developing a new product to help treat the symptoms of Pseudobulbar Affect (PBA), which cases uncontrollable outbursts of emotion in people with ALS, MS, and other neurological conditions.

Some of the key findings:

Uncontrollable laughter and crying (known as PBA or emotional lability) can be common in ALS, but 20% of patients did not realize the two could be associated.

Two thirds of patients (66%) had recently experienced some kind of uncontrollable emotion. The most frequent response (17%) was that patients had experienced crying, laughter, and outbursts of anger; the least frequent response was from patients who experienced only uncontrollable laughter and anger (3%).

Half of patients (51%) reported their emotional episodes to their physicians. The proportion reporting it to their doctors was highest for those with laughter & anger (78%), and lowest for those who only had outbursts of anger / frustration (17%).

We also received a number of responses in the open text section of the survey. These were very useful and enlightening as they gave a richer sense of patients' experiences with their emotional outbursts:

"I am glad to have someone say it is part of my problem. One Neuro will telll me it is not part of ALS, and another will say it is."

"...the most common symptom I experience is that of exaggerated emotions. So when I try to tell a joke, these days I can't stop myself laughing before I deliver the punch-line, which is not the 'old me' at all. Similarly if I see something of an emotional nature on TV News, or listen to an emotionally charged piece of music, I immediatley get an emotional reaction (just short of crying) - once again not like the 'old' me."

"Just knowing that emotional lability is a symptom of ALS has helped in dealing with it. I find that when I am tired, I am more susceptible to emotional lability. I deal with it by reminding myself that I am still me and I am still as strong intellectually as I ever was - and this helps keep control."

"In gathering information, it helps me believe that someone is considering issues related to this disease and there may be hope for progression in the area of research. This provides a sense of hope for me & helps me cope with my condition. Thank you."

Paul Wicks, PhD

R&D Director, PatientsLikeMe.Com