By 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.
“I just cried in relief,” says Petrine. “At the end of testing, [McHardy] said, ‘I can tell you you’re not imagining what’s happening to you. And I can help you.’”
McHardy created an individualized plan for Petrine that targeted her problem areas and helped her see her strengths.
“People often focus on what they can’t do versus what they can do,” says McHardy. “What I do is create a treatment plan so they can see where they function well and what part of their brain is having more dysfunction.”
That bag of tricks
Now for that bag of tricks. Consider the following tips from experts and people with lupus:
Plan to succeed
When Petrine gets in her car to head somewhere, she assumes she might get lost. It’s happened before. Now she takes a list of who she’s going to see, the address, the contact number, her cell phone, and directions. That way, if she does get lost, it’s not so scary, she says.
Write it down
Pen and paper—or maybe a planner or smartphone—are the key to many people’s ability to roll with the changes to their cognitive function.
The point is to write down everything you have to do:
• Who you have to meet.
• Tasks to accomplish today.
• Where you need to go.
• Questions you want to ask.
Once you do that, create a system for yourself. It can be as simple as carrying around a notebook. Hassett suggests you write tasks in pen and highlight them when they’re complete so you can go back and see what you’ve accomplished and what you have yet to do. Whatever you use, it will track your activities so you stay productive and focused.
Take your time
Puzzling things out takes time. So plan to take that time.
“All people overdo it, and people with lupus are no different,” McHardy says. “If you used to be able to do something in an hour, allow yourself two hours or more, depending on your symptoms at the time.”
If you’re taking longer to accomplish something, you have to cut down the number of things you plan to do. Petrine admits she was once quite the perfectionist. But when her cognitive symptoms flare, she knows she can’t do everything.
“Now I cross a whole bunch of stuff off my list and then give myself lots of time to do what’s left,” Petrine says. “It’s for my physical self as well as my mental self.”
There was a time when Petrine would head to her basement to get clothes out of the dryer and realize laundry was done. It was frustrating. Now she has a cure for it: visual cues.
“I put a hanger or some other visual cue in the basement if it needs to be done and put it at the banister when it’s done,” she says. “It’s sort of like living in a funhouse, but not so fun. It’s that feeling that you’re going down a hall and you open the door to see, ‘Is the laundry done?’ It’s a very surreal feeling. Now I have a lot of visual cues that other people don’t notice, but help me.”
One thing at a time
While not everyone who has cognitive symptoms has trouble multitasking, Petrine and others have found that in order to focus, they have to kill the distractions. For Petrine, that means driving without the radio.
“The same is true if you’re cooking and the TV is on,” says Hassett. “You may find yourself forgetting what you’re doing. It may mean that you need to turn off the TV.”
Talk around it
Darlene Westgate, 38, once prided herself on being articulate and knowledgeable. She’s still both those things, but sometimes her conversation doesn’t reflect it. She can have a hard time finding words, which is frustrating.
“If I can’t think of a word I’m looking for, I find a different word or a different way to put it,” says the Los Lunas, NM, resident, who was diagnosed with neuro-psychiatric lupus in 2000. “It works. I look for a similar word, or I rephrase it to avoid the word.”
Monitor your symptoms
Claude Thormalen’s cognitive symptoms showed themselves in a few ways. The 69-year-old Lake City, CO, resident was working as a school counselor when he realized he couldn’t remember any details of his discussions with suicidal teens, including the plans he’d made to try to help save their lives.
However, doctors who diagnosed his lupus didn’t identify these cognitive symptoms when they began in the 1990s. He began to fear what might happen if he made a wrong decision or forgot an important meeting. Eventually, he made the very difficult decision to retire.
It took years of rest and slowly working on rebuilding his processing skills, but Thormalen’s cognitive function has improved. For him, it was a matter of putting his health needs before any-thing else, giving himself the time to rest as much as possible, and slowly reintroducing things he loved to do, such as chess and reading.
Chess is one of the ways he knows he has improved. As the school counselor, he had started a chess club for students, but “almost overnight” his ability with chess disappeared.
“My brain felt very tired, and I could not think or plan my moves,” says Thormalen. “I was being beaten by all comers.” Now Thormalen knows he’s having a cognitive flare if he’s not doing well at the game.
“I used my chess game as a sign post,” he says. “If I could win a game or two with my wife, then I was getting better.”
Channel your skills
Because Westgate sometimes needs extra time to think, she now prefers to interact with people online. She volunteers with the Lupus Foundation of America on its message board, helping people find answers to their questions. This allows her to use her skills and interact with people in a way that accommodates her symptoms.
“I don’t like to appear stupid, and online I can take my time to write things out, stopping to do research as needed,” she says. “A lot of people on the boards comment on how smart I am. They don’t understand what it’s like.”
If all this seems too much and you’re overwhelmed by the changes you have to make to accommodate your cognitive symptoms, you’re not alone. But you also don’t have to beat yourself up. After all, it’s a disease—it’s not you.
“When you experience changes in the functioning of your brain, your whole self-image can change,” says Hassett. “It’s important for you to be forgiving with yourself. You are still of incredible value! Just because you’re not processing things as well as you used to does not mean that you are any less of a person. You still have much to offer. This fact is something that you must not forget.”
That’s the conclusion Thormalen reached. When he retired because of his symptoms, he felt incredibly guilty about being unable to work. He couldn’t play chess; he couldn’t read. He didn’t feel like he was contributing.
“I had worked all my life and here I was, 56 years old and not working, and sleeping most of the day,” he says. “Getting over that guilt was one of the hardest things I ever had to do.”
Finding your way
Adjusting to lupus symptoms is always a process of being willing to adapt. For people with cognitive symptoms, adjustment means finding worth in their new abilities.
“My intellect is still there, but I had to stop wanting my old self,” says Spaulding, a former budget manager for the City of Sarasota. “You have to pull deep inside yourself. You have to be able to say, ‘I have two arms, two legs, and I still have my brain. I just have to adjust my living to fit in with this.’ I have a lot to offer in my own way.”