The shifting tides of moods in MS
PBA: A sea of emotion
When David Diehl, 57, of East Helena, Mont., began to display dramatic emotions that didn’t match external events, his wife Arlene’s radar went up—and this was before David had been diagnosed with MS. Arlene’s father had lived with MS, and she had seen this phenomenon—pseudobulbar affect, or PBA—in him. PBA, which occurs in about 10 percent of people with MS (and in certain people with other types of neurological diseases or brain injuries), is a direct result of the changes in the brain.
PBA can exaggerate the emotion you’re feeling, or there can be no relationship between your behavior—laughing or crying—and how you feel internally. The key is that the spells are uncontrollable, and can be alarming, both to the person experiencing them and to others.
Arlene was familiar with it, though. “My father would laugh and cry at strange times; we all knew it was part of the disease. I immediately recognized it in David, and very soon after, he was diagnosed with MS.”
David says, “I experience it the most with laughing. For instance, when we went to a friend’s funeral, someone told a mediocre joke—and I laughed through the whole funeral. I was so ashamed. And the joke wasn’t that funny!” With the help of his wife and his physician, though, David eventually figured out what was going on.
Treatments for pseudobulbar affect initially included only antidepressants and levodopa (a medication more commonly used to treat Parkinson’s disease), says Dr. Minden. In 2010, the FDA approved Nuedexta® as a medication for treating PBA. It’s thought to work by affecting the centers of the brain that control emotion. David has started taking Nuedexta and says it’s helped reduce his PBA significantly, and with almost no side effects. As with all medication decisions, you’ll want to discuss the best treatment for you with your physician.
It’s a family thing
No matter which emotional symptoms you may experience with your MS, remember that your family is part of it, too.
“Family counseling is incredibly important—both for education as well as therapeutically,” says Dr. Miller. It can help family members understand that you may go through psychological changes that aren’t necessarily “you.”
This is essential, especially if you have young kids at home. The Diehls say that it was hard to explain the mood changes to their children, who were 9, 11, and 13 when David first had neurological symptoms.
“They just thought, ‘Dad’s being ornery,’” says Arlene. “Here, you have a physical disability, but put on top of it the ups and downs, and inappropriate emotional stuff—it can be hard. We all knew that it was not normal, not really who their dad was, but it was still disturbing to them.” But talking about it, as a family, with their pastor helped them cope. “We explained that this is part of [what it means to have] the disease,” she recalls.
Ultimately it paid off. Arlene says that now that the kids are grown up, they understand and are very supportive. “Our daughter gave David a Father’s Day card last year,” says Arlene. “It said, ‘I know I put you through the wringer, but you were no piece of cake either!’ We can laugh because now we understand it.”
David’s final piece of advice is for people to really internalize that there’s a difference between them and their MS, especially when it comes to the emotional symptoms. When mood symptoms first pop up, he says, “You think it’s you. You think, ‘I’m angry about something; I need to overcome this.’ But you need to understand it’s not you, it’s [you having] the disease. And there are things you can do to mitigate the symptoms.”
If you’re newly diagnosed and experiencing emotional symptoms, or if you’ve had MS for a while and are experiencing psychological changes for the first time, they can be unnerving. But remember that you’re not alone; these symptoms are incredibly common with MS, and talking to others who are experiencing the same things can be very helpful. Finding a support group that lets you share your experiences with others, and listen to theirs, can feel really good. But if you don’t start to feel better quickly and completely, talk to your doctor and have a psychiatric evaluation. It is simply not “normal” to have persistent feelings of depression and anxiety.
Also keep in mind that you can tailor your treatments to your lifestyle. “Think about what’s going to work best with your life,” says Dr. Minden. Is your support-group or individual therapy meeting going to be accessible, and be a good fit for you? In a group therapy situation, if you have symptoms of urinary frequency, will it be convenient to step out? If you’re in individual therapy, how easy or difficult is it going to be to get to an office appointment?
There are many things to consider, but there are also plenty of effective options.
The main thing is to not suffer in silence. “Let your healthcare provider know!” Dr. Giesser urges. “Mood disorders are almost always amenable to treatment—to medications, counseling, or better, to both.” And getting the treatment you need can make all the difference.