THE EMOTIONAL ASPECT – No. 7

Previously, I posted an excerpt from a recent study sent to me by someone I know who was a participant in this study. It explained the effect that this disease can have on a certain area of the brain resulting in uncontrollable, and often inappropriate, crying and/or laughter. As I’ve written before, this disease affects different people in different ways, and this particular symptom is no exception. You can see from the findings of the study that individuals’ experiences vary greatly. In this post I’d like to describe my experience of this symptom.

My experience began long before I was diagnosed with isolated incidents of uncontrollable and at times inappropriate laughter. Since my diagnosis these incidents have become more frequent and have included crying as well. I’m especially prone to these symptoms when I am tired or under stress.

It’s hard to predict what will set me off, but a few patterns have emerged. Strong emotions in others often elicit an emotional response in me, but sometimes an inappropriate one. For example, not being able to stop smiling at a friend’s father’s funeral, or laughing at my wife when she is angry. This is often very embarrassing for me and easily misunderstood by others.

Another highly frustrating trend is for me to cry or laugh when I am angry. Some folks who know me may be surprised by this, since I very seldom get angry. But it does happen, and when it does, it is usually accompanied by one or both of these responses. Crying when angry is frustrating enough, but laughing is maddening. Imagine… You’re angry; You start to laugh; The angrier you get, the more you laugh; The more you laugh, the angrier you get that you can’t stop laughing; which makes you laugh even more! Eventually, it’s easier to give up on being angry and enjoy a good laugh, at which point you start to cry!

Basically, when it comes to laughing and crying, I can do either at the drop of a hat. Just thinking of something funny, let alone telling a joke, is enough to get me giggling. And I can sob uncontrollably at a sad story (The Shack really got me going), during a church service, listening to music, and yes, at the movies (even during Terminator)!

The study also mentioned possible outbursts of anger and frustration as a symptom. I can’t say I’ve experienced much of this, but I can say that a level of frustration and even anger is a natural, if not unavoidable, result of living with this disease. If it weren’t for the peace that comes from an intimate relationship with God, that frustration would potentially be overwhelming for me to deal with.

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