The mind and MS.

THE MIND AND MS

The "mind" is an amorphous concept that means something slightly different to each one of us. It is generally accepted, however, in scientific as well as lay groups, that it refers to the collection of abilities and attributes that makes each of us unique. It includes personality and emotions, intellectual functioning, as well as much of our control over sensation and movement.

Multiple sclerosis is thought to affect all of these aspects of the mind, either directly or indirectly. Numbness and visual problems, which are often common in multiple sclerosis, are usually the result of damage to specific nerves in the brain and spinal cord. Their assessment is relatively straightforward. In contrast, it is not clear if emotions such as depressive feelings, are a reaction to the disease or the result of damage to specific nerves in the brain and spinal cord. Such psychological factors are more difficult to evaluate.

Intellectual functioning can be equally complex to assess: it is sensitive to a variety of potentially disrupting and damaging factors such as aging, injury to the brain, etc. It can be temporarily affected by nervousness, emotional stress, depression, sleep disturbance, and especially fatigue. It is also affected by nutritional factors (e.g., hypoglycemia), side effects of prescription drugs and substance abuse. Finally, many of these factors can act in combination.

Little wonder that the study of intellectual impairment, particularly as it pertains to multiple sclerosis, is fascinating and challenging to scientific investigators.

As background to understanding the research, it is useful to know that, although many factors play a role in MS-related intellectual problems, the most important one is probably damage to brain tissue. Lesions in the cerebral hemispheres--the higher areas of the brain--are the ones of greatest significance.

At one time, autopsy was the only reliable way for scientists to see such lesions. The classic study of autopsies by Brownell and Hughes in 1962 found that in the myelinated areas of the brain (the white matter), plaques occurred with roughly equal frequency in the right and left halves of the brain and in all lobes. MS lesions were especially common near the ventricles, the inner cavities of the brain through which the cerebrospinal fluid flows.

More recent studies using magnetic resonance imaging (MRI) have confirmed these findings in living persons. Moreover, a number of studies have found a definite relationship between brain lesions revealed by MRI and intellectual impairment, leaving no doubt that MS can cause intellectual dysfunction in some people.

In the past, estimates of the frequency of intellectual dysfunction in MS have ranged from zero to 100%--a rather wide range to say the least! These inconsistencies have largely resulted from two factors: widely differing methods of assessment and the tendency of studies to assess different types of patients.

However, most recently Dr. Stephen Rao of the Medical College of Wisconsin, has concluded that around 50% of people with MS show no evidence at all of intellectual dysfunction, and that of the other half about 40% have only mild dysfunction which has little or no impact on daily life. Less than 10% have moderate to severe dysfunction.

To summarize, in 9 cases out of 10, a person with MS will either have no intellectual dysfunction or the problems will be limited--a most reassuring finding.

These figures are very encouraging; nonetheless, since this topic is a worrisome one for people with MS, it is important to discuss exactly what current research is showing.

Which functions might be

affected?

Although investigators are still in the process of defining which intellectual functions are most vulnerable in MS, certain consistent information has emerged about the precise functions which are affected.

A memory or recall problem is the most frequent among those troubled with cognitive (intellectual) dysfunction. Studies completed by Dr. Sarah Elpern, a psychologist practicing in Washington, D.C., and Dr. Rao indicate that many people with MS are able to store information adequately but have difficulty retrieving that information. An example might be the inability to recall an important phone number, one learned in the near past. In contrast, there appears to be little problem in remembering information from the distant past, for example, the meanings of words that were learned in school.

Abstract reasoning and problem-solving abilities are also sometimes affected. These abilities include the capacity to analyze a situation, identify the salient points, plan a course of action, and carry it out. Specifically, some people with multiple sclerosis report that they have begun to exercise poor judgment. These problems may be a manifestation of intellectual dysfunction.

Verbal fluency is still another area found to be affected in MS. This is often manifest as the "tip-of-the-tongue" phenomenon. You want to say a word, it's on the tip of your tongue, but you just can't think of it. Verbal fluency was found by Dr. William Beatty of North Dakota State University to be impaired in the majority of persons with chronic progressive MS.

Since recall of information and word-finding require rapid processing of verbal information, considerable interest has developed in studying the speed of information processing in people who have MS. Dr. Rao recently completed a study in which he found that people with MS performed as well as control subjects on a specialized memory task but did so with significantly slower speed of information processing. In my own work, many people with MS have described to me the sense that their thinking is "slowed," that they are not able to think through and respond to things as quickly as they once did.

If any one of the above symptoms manifests itself, it is worth taking the time and spending the money to get a professional evaluation. It lets you know precisely what you have to deal with; it also may save wear and tear on your family. For example, someone might report that his or her spouse with MS is "hard to talk to," "doesn't listen," "doesn't seem to take care of things." Such behavior may be interpreted as stubbornness, indifference, hostility or a "personality" problem when in fact it may be the first sign of problems in memory or reasoning. Similarly, when someone suddenly begins to make poor judgments, people do not automatically think of intellectual dysfunction as a possible cause

What can be done to

alleviate intellectual problems?

Get it out in the open. As recently as the mid 1980s I attended meetings in which professionals advocated not discussing intellectual problems in public because they would upset people. My experience, however, is that people with MS almost always want information on this--or any other topic affecting them.

Arrange for an evaluation: One of the most important reasons for bringing the possibility of intellectual dysfunction out into the open is so that the problem can be evaluated. Since intellectual function is sensitive to many disrupting influences, what appears to be intellectual change due to MS lesions may be something entirely different, such as a clinical depression or severe fatigue. these conditions can sometimes be treated with drugs and/or psychotherapy. Intellectual changes may sometimes be treated through rehabilitation.

Assessment of intellectual function should be done by a qualified neuro-psychologist or clinical psychologist, preferably someone with some experience with MS. A psychologist not familiar with the disorder may have difficulty selecting the proper tests and interpreting the results. Such an evaluation will take at least two to three hours, often much more, and will cost several hundred dollars. A psychiatrist or neurologist can perform a briefer evaluation using less formal methods than the psychologist, but this briefer evaluation can generally pick up only the most severe forms of cognitive dysfunction. For example, Dr. Janis Peyser of the University of Vermont completed a study in which she found that almost half of the patients whom neurologists considered to be without intellectual dysfunction were found to have such problems when tested by a psychologist. Since all such psychological testing is costly and time-consuming, the decision to go ahead with it should be made in the course of idscussions with your physician, family, and any other professionals who might be involved.

Share with others: Very often our fantasies and fears about a problem are much worse than the reality. Ask questions, read, attend lectures if possible, and talk to others who have the same problems. In MS support groups and educational meetings, cognitive dysfunction is a very frequent topic of discussion. Part of the sharing is purely on an emotional level but part is also practical. Comparing notes and learning how others cope helps to expand and enhance one's own resources. It also helps to remove a sense of stigma.

Get counseling if it seems indicated. Noe everyone who experiences a few memory lapses needs counseling. However, at times counseling and/or individual psychotherapy may help in dealing with the impact intellectual dysfunction has on self-esteem and practical everyday living. It can also address problems such as depression and anxiety which adversely affect intellectual function.

Consider cognitive rehabilitation.

In head-injury and stroke, it is routine to consider some form of cognitive rehabilitation. MS may be unique in virtually ignoring this option, perhaps because cognitive dysfunction was swept under the carpet for so many years. Fortunately, such rehabilitation is receiving increasing attention. There are several different approaches, each with its own advantages and disadvantages.

First there is treatment with medications. For example, in Alzheimer's disease memory problems are thought to stem in part from low levels of a substance known as acetylcholine, one of the neurotransmitters responsible for helping to conduct signals between nerves. The drug physostigmine is being studied as a treatment for memory problems because it slows down the body's natural breakdown of acetylcholine, resulting in higher levels of this substance. Studies using physostigmine in MS are also under way but remain highly experimental and not currently available and recommended for use in MS. Another class of drugs attempts to improve intellectual functioning by enhancing metabolism in the brain, the utilization of oxygen and nutrients by nerve cells. A third class of drugs are what might be called "psychic stimulants." These include drugs such as Cylert (pemoline) whihc is used to treat fatigue in MS. To date there are no published reports on the use of these drugs to treat cognitive dysfunction in MS. However, there is increasing interest in evaluating their usefulness.

The second approach to rehabilitation is the use of compensatory measures. We all use this approach which includes keeping notebooks and writing things down. The new pocket electronic databanks are great for this since they can beep you dozens of times a day to remind you of tasks and appointments and are able to store more phone numbers than you will ever need.

One of the most widely employed forms of cognitive rehabilitation involves the use of cognitive strategies. A simple example is the little poem, "Thirty days hath September." More sophisticated approaches train people to associate items that need to be remembered with familiar objects in the home.

Both compensatory measures and cognitive strategies, like their physical cousins, the cane and the walker, do not address the underlying problem, but instead provide an alternative, assisted way to perform a familiar task that has become difficult. A disadvantage, however, is that these techniques result in additional burden to an already compromised intellect.

The approach that is currently generating the most interest involves attempts to directly improve function. Just as a weak muscle may be strengthened through the right type of exercise, so too it may be possible to improve certain intellectual functions through carefully designed and supervised programs of graded practice. Such measures do attempt to address the underlying problem and may be combined with compensatory measures and cognitive strategies to achieve maximum benefit.

A study funded by NMSS is under way at Albert Einstein College of Medicine to evaluate one such approach. We have learned a lot during the last few years concerning the nature and severity of intellectual problems in MS but we are just beginning to explore ways to help. As research progresses we will be adding significantly to our ability to deal with this often overlooked but very important feature of multiple sclerosis.

Dr. Nicholas LaRocca, a psychologist at the Albert Einstein College of Medicine, has been one of those investigating the relationship between cognitive (intellectual) dysfunction and MS for the past ten years. His studies have been based on patients seen on a regular basis at the Research and Training Center for MS at Einstein. He is currently directing a Society funded project to assess the value of cognitive retraining for memory problems in MS. In the following article he reports on the background and the present status of scientific investigation into intellectual changes in multiple sclerosis based on his own work and on that of many of his colleagues.