From the Archives: Spring 2010 issue of Lupus Now

Think Again: Coping with changes in cognitive functionby Heather Boerner

Cyndy Spaulding has a lot to say -- about books she’s read, about the news, about politics.

But as her lupus has progressed, it’s harder for her to get the words out and hold on to her thoughts long enough to carry on those conversations.

"It’s like looking for a lost file on a computer: Sometimes it takes a while to find it, and it’s hard to have an intelligent conversation," says the Sarasota, FL, 60-year-old who was diagnosed with lupus in 1991. "Sometimes you just wish you could say, ‘Please step into my body and you will know what’s happening to me.’"

Spaulding is not alone. Between 20 percent and 60 percent of people with lupus experience some effect on their cognitive function. And just like other lupus symptoms, cognitive dysfunction is treatable, says Mary McHardy, M.S., L.P., a psychologist at Polinsky Medical Rehabilitation Center in Duluth, MN, who helps people with lupus identify and treat their cognitive symptoms.

"What you need is a basket of tricks," McHardy says. "The key is to adapt to your new abilities and learn to work with them."

Cognitive dysfunction 101

Anything that limits your ability to think clearly, reason, or remember something is a cognitive symptom. The American College of Rheumatology has identified 19 psychiatric symptoms associated with lupus. Some of those are cognitive, including:

Trouble concentrating Inability to multitask Poor memory Difficulty finding the right word Slow processing speed -- that is, rereading the same sentence repeatedly or being unable to keep up

with a conversation Poor executive function abilities, which means slow problem-solving or plan-making

Back to basics

In the process of treating cognitive symptoms, you have to rule out other causes, says Afton Luevano Hassett, Psy.D., associate professor of medicine at the Robert Wood Johnson Medical School in New Jersey. Physical symptoms can exacerbate cognitive symptoms.

"Some neurocognitive symptoms are due to secondary things like lack of sleep, intense fatigue, lack of exercise," she says. "When you’re in pain, it’s very, very hard to concentrate. If you can’t concentrate, you can’t remember. This does not diminish the significance of problems with cognitive symptoms, but it does mean that you have to take care of all symptoms of your disease to address the cognitive ones, as well."

Next, consider having a neuropsychological evaluation, says Mari Anna Petrine, a 43-year-old former graphic designer in Duluth, MN. When she was diagnosed with lupus in 2006, she was already starting to have cognitive symptoms. She found she couldn’t remember what her boss said five minutes ago. Assignments were taking her much longer to complete, and when she finished them, they still contained errors. She had a hard time remembering if she’d finished her work.

She learned to deal with those symptoms after having a neuropsychological evaluation and working with therapist McHardy. The test can take up to eight hours -- Petrine’s was split into two four-hour sessions to accommodate her fatigue -- and includes quizzes for every part of brain function. At the end, Petrine had a clear list of cognitive problems to address and documentation of her symptoms. That helped her feel like she wasn’t crazy.

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