Real Story:
Ross
Caring for a loved one who lives with Multiple Sclerosis (MS) can be challenging. Watching his wife Karen also struggle with sudden, frequent, unpredictable, and exaggerated crying or laughing episodes was even more difficult.
Karen was already diagnosed with MS for years before she and Ross met and got married. Even for a practicing physician like Ross, her crying and laughing episodes remained unexplained. But together, they kept searching until they found an answer.
Ross, caregiver for Karen, patient with Multiple Sclerosis and PBA, taking NUEDEXTA.
“I used to constantly try to be careful so that I didn’t say something wrong or provoke a crying or laughing episode that could be difficult to manage.”
Life with undiagnosed PBA was stressful
Karen’s doctors saw her uncontrollable crying episodes as a symptom of depression resulting from the burden of MS. As a doctor, Ross understood their thinking. “Karen was living with unpredictable crying and laughing episodes,” says Ross.
Despite Ross and Karen's general happiness, some days were frustrating. “Karen was going through these unpredictable episodes of uncontrollable crying or laughing so frequently, and that just makes anyone irritable. It’s a constant grind,” says Ross. He remained positive despite the tension her unpredictable episodes caused in their relationship. “I used to tell Karen, ‘This isn’t you. This is not a normal response from you.’”
Seeing results with NUEDEXTA
When Ross and Karen discovered a condition called PBA (Pseudobulbar Affect) through an MS forum, they were thrilled to find a 2009 clinical trial specifically for PBA—studying the treatment now called NUEDEXTA.
“It’s important to understand that a person with PBA is not trying to be difficult, they’re not trying to be solitary, they’re not trying to be anti-social, they’re not trying to be cranky – they’re just coping with their PBA symptoms.”
Through that study, Karen was officially diagnosed with PBA. She’s been taking NUEDEXTA to reduce her PBA episodes since it became available for prescription in 2010, under the supervision of her doctor. Consistency is important, Ross tells us. “I want other caregivers to make sure that their loved ones take the medicine as prescribed by their doctor because that does help a lot.”
Guidance from a caregiver
If you care for someone with a neurologic condition or brain injury and you think they might have PBA, Ross has some advice: Go ahead and help that person seek diagnosis and treatment from a doctor. “As a caregiver, you have to encourage them to get the help they need from doctors and discuss an appropriate treatment,” he says. “I want to tell people to share their crying and laughing symptoms with a doctor and ask if it could be PBA. You have to get a diagnosis from a doctor to get on treatment.”
