MS and the Mind
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
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.
Where the glitches are
· 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.
· Not Alzheimer’s
· Not loss of intellect
· Not mental illness
Role of MRI
Three kinds of specialists can help
Retrain or compensate?
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
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.
“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
“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.
For additional information
Martha Jablow is a frequent contributor to the Society’s magazine, InsideMS.
|Last updated May 2006|