Episodes of Uncontrollable Laughing and/or Crying That Didn’t Match How He Felt. Doctors Said It May Be Depression, but It Was PseudoBulbar Affect (PBA).
Doctors told Jim he might be depressed. As a person with Parkinson’s disease, this made sense, they said. The sudden, frequent, uncontrollable crying at unusual times appeared to be depression from dealing with a degenerative disease for about 20 years.
But Jim, and his wife Lori, who’s also his caregiver, felt this diagnosis didn’t seem right. Sure, aspects of living with Parkinson’s disease are depressing. Yes, some days it was hard to be positive and “look on the bright side” — but Jim was experiencing sudden, frequent, uncontrollable episodes of laughing and crying that didn’t match how he felt.
This impacted their marriage. Jim was frustrated and embarrassed by his PBA symptoms, and Lori was at a loss for how to help. It was difficult for them to connect, and neither was sure what to do.
When Jim started having bouts of sudden laughter — often at inappropriate times — Lori knew they had to dig deeper with their doctor.
“My laughing and crying didn’t match my mood,” Jim told The Mighty.
Then, while watching TV one night a few years ago, they saw a commercial explaining a condition they’d never heard of before: PseudoBulbar Affect, more commonly known as PBA, which causes sudden, frequent, uncontrollable laughing and/or crying that doesn’t match how you feel and occurs secondary to another neurologic condition. The commonalities between the symptoms described — crying when you don’t feel sad and/or laughing when you don’t feel amused — and what Jim was experiencing were startling. [1]
“I saw the commercial, and I thought, ‘That’s my husband,’” Lori said.
The husband-wife duo believed this is what Jim had. Now they had to discuss it with their doctor.
“When we went to the doctor the first time and I told them [about PBA], the doctor thought the laughing and crying could instead be depression, or related to an anxiety disorder” Lori recalled, “but I kept pushing… I told them you better check it out.”
As a caregiver and wife, Lori is also Jim’s biggest advocate. When he is having trouble articulating or when friends, family, or even doctors, assume he isn’t sure of himself, Lori swoops in.
Luckily, they were finally able to have a productive conversation with their doctor. They were right — Jim had PBA. This outcome came down to being prepared — Lori had looked up symptoms of PBA and data on its prevalence in people with Parkinson’s disease — and downright determination. The pair continued to share the experience Jim was having with sudden, frequent, uncontrollable laughing and/or crying until they were able to partner with a doctor who was knowledgeable about PBA, and understood that Jim’s symptoms were not depression, but PBA.
PBA can be an unrecognized or misunderstood condition, but it is actually not as uncommon as many may think. Approximately 2 million people in the U.S. with certain neurologic conditions or traumatic brain injuryhave PBA, and the number of people who have symptoms suggestive of the condition may be as high as seven million. The numbers are eye-opening: approximately 24 percent of people with Parkinson’s disease, like Jim, have symptoms of PBA; as well as 39 percent of people with Alzheimer’s disease; and 46 percent of people with multiple sclerosis (MS). [2]
The reason you still may have never heard of PBA is because it can be misdiagnosed as depression; and it’s easy to assume this is the case if a person is dealing with a challenging condition like ALS (Lou Gehrig’s disease)or the aftermath of a stroke.
Depression is a serious condition, and if you’re experiencing it, you know your feelings are valid and you deserve help. However, depression is a mental disorder that negatively affects how you feel, the way you think and how you act. PBA, on the other hand, is neurological, meaning it’s caused by damage to the nervous system and affects someone’s emotional expression – specifically in the expression of laughing and crying. You can have both depression and PBA, but unless you manage both conditions, you may still struggle.
Once Jim got his PBA diagnosis, he and Lori were able to work with Jim’s physician and talk about how to manage his condition. Managing his episodes of laughing or crying has allowed him and Lori to feel better about getting out of the house and having some fun together.
“On the weekends I drag him with me shopping,” Lori said. “We have a few sets of friends and we go to auctions, and we have our grandkids, so that makes Jim very happy.”
Despite the degenerative nature of Parkinson’s disease and the challenges that come with it, Jim and Lori focus on the positive each day, and are happy to have support in managing his PBA symptoms. After this experience, they are more confident in talking with doctors and feel like they have more input and control over their own health. Most important, they take life a day at a time. They have each other.
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[1] Miller A, Pratt H, Schiffer RB. Pseudobulbar affect: the spectrum of clinical presentations, etiologies and treatments. Expert Rev. Neurother. 11(7), 1077–1088 (2011).
[2] Work S, Colamonico JA, Bradley, WG, et al. Pseudobulbar affect: an under-recognized and undertreated neurological disorder. Adv Ther. 2011;28:586-601
MLR-PBA-US-0124-1118