MS and the Mind
Memory and Problem Solving
by Martha Jablow
These are the two areas where MS most often creates glitches.
The MS symptoms that usually grab the spotlight are the physical ones—balance, gait, muscle control, bladder control, vision, numbness. But in the last decade, light has also come up on how MS may affect cognition—the mind’s ability to store, organize, and recall information. Memory deficits, a slower response to problem solving, or a shorter attention span have always been part of the disease for some people, but these symptoms were often misunderstood or downplayed.
“Before 1990, many physicians assumed MS caused physical disability but left the mind intact,” said Dr. Stephen M. Rao, who has been researching cognitive aspects of MS since 1981. He is currently a professor of neurology and a clinical neuropsychologist at the Medical College of Wisconsin in Milwaukee. “When people complained to their doctors about memory problems, they’d hear, ‘You’re not really forgetful. You’re just depressed or tired,’ ” Dr. Rao said. Other neurologists chalked the problems up to the person’s attitude: “If only he’d try harder, he’d remember ...”
“Until the late 1980s, gait was seen as the primary MS problem,” said Dr. Nicholas LaRocca, a clinical psychologist who is currently the Society’s director of Health Care Delivery and Policy Research. “Cognition wasn’t studied in any great detail in large clinical trials, and many neurologists said MS doesn’t affect memory, period. But now we know that isn’t so.”
Experts now know mild problems are common
Recent research shows that from 40% to 60% of people with MS develop some degree of “cognitive dysfunction”. Most people who are affected have mild problems. Moreover, there is little correlation between physical and cognitive symptoms. For example, one person might progress swiftly to total inability to walk but never develop any cognitive problems, while another might have poor memory as one of the very first signs of MS, and never develop severe physical symptoms.
Cognitive problems are not inevitably progressive. They are not destined to worsen steadily once they start. Like motor or sensory problems, cognitive difficulties may improve, or become worse, or stay about the same. As all MS experts agree, variability is the hallmark of this disease.
Serious problems are far less common. Although solid data are not really available, experts guesstimate that 5% to 7% of people with MS have cognitive problems that can be called serious. These include moderate to severe impairment in thinking, reasoning, or judgment, major personality changes, or a lack of self-awareness leading to inappropriate behavior.
Cognitive dysfunctions arise when lesions (or areas of MS damage) occur in certain locations in the brain. In MS, myelin, the material that sheathes nerve fibers (or axons) in the brain and spinal cord, is attacked or worn away; scarring is often left in place of the healthy myelin. Scientists recently learned that the underlying nerve can also be damaged, even severed. MS lesions may develop anywhere in the brain or spinal cord, but when they appear in the cerebral hemispheres, the “thinking” part of the brain, some thinking functions can be affected.
Where the glitches are
“The vast majority of people have relatively mild problems, mostly in the area of memory and attention,” Dr. Rao said. “They’re more nuisance problems than seriously disabling ones.” These are the most common symptoms:
· Recent memories are more difficult to recall. A person can’t remember what she ate for breakfast or a phone number that she learned last month, but has no trouble remembering phone numbers of childhood friends or the Social Security number that she’s had for 20 years. Most people with this symptom can still learn and remember new information, but recall will take a little longer.
· Fluency with words may be diminished. The person searches for a word. It’s on the tip of the tongue, but he just can’t think of it. This too is a recall problem. It is not the same as the changes in voice quality or a slower rate of speech, which are associated with physical changes caused by MS.
· When a lot of information is coming all at once, processing may take longer. If several people talk at once, or the television or radio is on, or even if a single speaker talks too rapidly, the barrage of information can be too overwhelming for the person with MS to sort out. (Eliminating distractions like background noise will help.)
· Judgment and problem solving may be slower or less reliable. Some people with MS-caused cognitive problems have difficulty analyzing a situation, coming up with a solution, and carrying it out.
Sylvia White, a 42-year-old Philadelphia woman, related a common example of this problem and how she dealt with it: “I wear a different jacket depending on the weather. One morning I’d pulled the door closed behind me, and it locked just as I realized my keys were in my other jacket pocket. No one else had an extra set of keys. My son’s set doesn’t include the key to the top lock. “I worried that he wouldn’t be able to get in when he got home from school,” said Ms. White, who has had MS since 1985. “When I have a problem like that, I can get frustrated because I know I can solve it but I just can’t figure out the steps at the moment. I’ve learned that I have to stop saying ‘I can’t do this; I can’t do this.’ I have to slow down my thinking, and then my brain will work. I can find a solution if I say to myself, ‘I think I can do this.’ But I need some time to get past the frustration.”
Once she took time to calm herself down, Ms. White asked a neighbor for help. He had a ladder.
He climbed through an unlocked second floor window and opened the front door from inside.
Some common misunderstandings about cognitive problems and MS need to be clarified. One is the confusion with Alzheimer’s disease.
· Not Alzheimer’s
Alzheimer’s is an entirely different disease from multiple sclerosis. Dr. Rao illustrated: “People with Alzheimer’s have difficulty storing information from moment to moment. They can’t use a notebook as a memory aid, because they won’t be able to remember why they’re even carrying it. MS-related problems tend to involve retrieving information. For a person with MS-related problems, a notebook or other gadget really works to make up for poor memory. The person with MS is able to store and retrieve information but may require more time to do so or may be somewhat less accurate in the recollection.”
· Not loss of intellect
Another misunderstanding centers on intellectual ability. MS-caused cognitive problems don’t mean that intelligence has declined. However, some people may not be able to think as flexibly as they once did. They may be less responsive to feedback from other people and find it harder to adapt to changes in routines or environments. They may need time and a supportive atmosphere to solve challenges.
· Not mental illness
Cognitive problems are sometimes confused with mental illness or emotional problems. Cognitive difficulties involve specific thinking processes. Unruly emotions may arise as a psychological response to having a frustrating chronic illness—especially if cognitive symptoms are present—or they may result from MS lesions in a specific part of the brain.
Role of MRI
Magnetic resonance imaging (MRI), which takes pictures of internal organs without X-rays, is the definitive way to determine where MS lesions are, but most experts say that an MRI scan isn’t all that helpful for cognitive issues. If problems like forgetfulness or poor concentration are interfering with work or family life, neuropsychological tests may be a better approach to effective management. These tests measure “cognitive performance” such as recall and attention. They are far more extensive than the 5-minute “bedside” assessment neurologists use, as they are designed to uncover the subtle problems typically caused by MS. A full assessment may require 25 hours, and it is considered the most accurate way to evaluate cognitive strengths and weaknesses. However, there are other avenues to explore with a referring physician if neuropsychological testing is impractical.
Three kinds of specialists can help
According to Dr. Rosalind Kalb, a clinical psychologist who has specialized in MS for some 20 years, 3 different kinds of specialists can evaluate cognitive dysfunction: a neuropsychologist, a speech/language pathologist, or an occupational therapist. “Although these 3 specialists use somewhat different assessment tools, they share the ability to identify cognitive changes that are affecting a person’s daily life,” she explained. “Sometimes the professional who tests you is determined by who is available in your part of the country.”
Retrain or compensate?
Rehabilitation techniques long used for people who’ve had head trauma or stroke may enhance cognitive functions for people with MS. These techniques are as sophisticated as computer-based training in which a person follows a repetitive on-screen task, or as simple as exercises using illustrated cards as memory joggers. The principle involves retraining to improve function by strengthening mental patterns.
The most useful approach is compensation, which means making adjustments for specific losses. “For coping with mild to moderate cognitive problems, try compensation strategies first,” said Dr. Kevin Riley, a psychologist in the MS program at Temple University Health Sciences Center in Philadelphia. InsideMS readers sent many suggestions for handling everyday cognitive problems, and most of them involve compensation.
A solid rehab program usually mixes retraining and compensation, and will be tailored to the needs and the strengths revealed in an individual’s evaluation, according to Dr. Kalb.
No medications have yet demonstrated long-term success in reducing cognitive problems, although a recent, small study of Aricept (donepezil hydrochloride), a drug that improves memory in people with Alzheimer’s, has shown some promise in people with MS. Drugs do play a role in treating depression, mood swings, and fatigue—all symptoms that can complicate cognitive issues.
An ounce of prevention
Can cognitive problems be prevented? The question is still open. But research involving the disease-modifying drugs (Avonex, Betaseron, Rebif, and Copaxone) indicates that all 4 slow down the rate at which new lesions develop in the central nervous system. If fewer lesions develop, fewer may occur in the critical parts of the brain that affect cognition.
Dr. Jill Fischer of the Mellen Center for MS Treatment and Research at the Cleveland Clinic Foundation reported that some disease-modifying medications have been shown to affect cognitive functions the way they affect physical functions. “They do not reverse cognitive problems,” she said, “but they can slow the rate of progression, and that’s reassuring.” And for people with progressive forms of MS, she noted, oral methotrexate may provide “a modest beneficial effect” on cognitive problems, as was indicated by Dr. Donald E. Goodkin in his recent research.
Psychologists, physicians, and people with MS all agree that understanding and support by family members are essential. Family members shouldn’t assume that the person with MS isn’t trying hard enough or doesn’t listen or pay attention.
“Family members need to recognize that these problems are not under the person’s control,” Dr. Rao said. “You wouldn’t blame a person for having problems walking because of MS, so don’t blame him or her for forgetfulness. A person who’s experiencing memory loss often feels guilty about it. That’s another reason family members need to be as tolerant and supportive as possible,” he added.
Taking action at work
“Most people wait until there’s a crisis to talk to their employer about their cognitive problems,” said Dr. LaRocca. “That’s probably a mistake. It may be wiser to try to open a dialogue with your supervisor before your performance is affected. You will have to educate your employer about the nature of the problem. First, an employer may assume the problem’s going to get worse, and it doesn’t for many people. Second, this disability is covered under the Americans with Disabilities Act, so if you need an accommodation to remain productive in your job, you will need to take some action.
“The Society recommends that you get advice on workable solutions and some help preparing for negotiation before you speak to your employer. The Society has information on job retention techniques and the protections the ADA provides. Call our 800 number first.” (1-800-FIGHT-MS)
A vocational counselor or occupational therapist may be your best resource if you need help minimizing a job problem. Dr. Rao cited this example: Workers at a Milwaukee brewery are trained in many different skills and are switched from task to task to avoid boredom. The brewery likes this policy because any one worker can fill in for another. But switching tasks frequently became frustrating and counterproductive for a worker with MS-caused cognitive problems. He’d been trained in 7 different tasks, but he began to forget them when he was moved from one to another. His union, a vocational counselor, and his employer worked with him to find a simple solution. They stopped the musical chairs, kept him at one task, and he performed it well.
In addition to family and employment support, the Society offers peer support, educational programs, and self-help groups where people can find understanding and practical advice. Talking with a psychotherapist may help control anxiety or other problems that so easily boil up along with cognitive difficulties.
The bottom line is that MS can affect the mind. Anyone affected by such symptoms needs to learn the facts about them and the ways to handle them effectively.
Personal Digital Assistants and Post-it Notes:
What the experts say
“What you’re trying to do is replace memory with organization.”
—Dr. Nicholas LaRocca
· Keep a daily diary or notebook. Write down all appointments, reminders, and lists of things to do in one place. When you make or receive a phone call, note the date, time, whom you spoke with, and a short reminder about what was said. Get in the habit of referring to this diary routinely, perhaps at the same time each morning and again in the evening for tomorrow’s schedule.
· Post a large family calendar in a prominent place—maybe the refrigerator door—where everyone in the household writes down their activities and schedules. Think of this calendar as “communications central” and refer to it daily. Check things off as they are completed.
· Use a wristwatch with a beeper, and set it to remind you of events. People who must take medication at certain intervals find this especially useful.
· Electronic gadgets like personal digital assistants are effective for lists, agendas, important phone numbers, and addresses. Or try other organizational gizmos such as a Day Runner, Filofax, or laptop computer—whatever works for you. Post-it Notes are useful, but they can get unstuck. Moreover, the habit may get out of hand. “I stick them up everywhere, but I may forget to throw them away once I’ve completed whatever I’ve written on them,” said Sylvia White. “If I don’t toss them, I wonder later, ‘Did I do that already?’”
· Keep important things in a designated place. Keep your daily diary on your night table or next to the phone, your keys in a particular drawer or on a hook near the door. Consistency and routine make it easier to remember where things are.
· Design a master grocery list, with all the items you normally need, and make multiple copies. Before going out to shop, review the list and check off the items you’ve run out of.
Try to stay calm when memory fails. “It’s normal to tense up or feel frustrated if you are forgetting or losing something, but when you do, you switch out of the problem-solving mode and into the angst mode,” Dr. LaRocca noted. “So take a few moments to calm down. Do slow breathing or other relaxation exercise. Your memory will usually clear.”
For additional information
Martha Jablow is a frequent contributor to the Society’s magazine, InsideMS.