|Cognitive and Perceptual Difficulties|
COGNITIVE AND PERCEPTUAL PROBLEMS IN MS
By Catherine W. Britell, M.D.
Problems with memory, thinking, perception, and language associated with MS are becoming recognized more and more -- twenty years ago it was though that cognitive impairments were present in only about 3% of people with MS. More recent studies show that 43% - 65% of people with MS have some kind of cognitive impairment.
Because of a general misunderstanding of the nature and management of cognitive impairment, it's probably one of the biggest threats to "personhood" for the individual with MS. Many people fear that having a cognitive problem will make them completely unable to hold down their jobs, unable to be the head of a family, and even incompetent to manage their own legal and financial affairs. This is scary, to say the least, even if not true. In addition, there's often a stigma associated with cognitive dysfunction. It's morally and socially OK to walk with a cane or drive a scooter -- but if you can't THINK normally, you're somehow in a different category of disability.
There's almost a medieval way of thinking here -- as though the brain is somehow the "seat of the soul" and that the person with cognitive dysfunction is spiritually damaged, or lessened in some basic essence of humanity -- silly and dangerous, but all too common.
Probably the most important thing one can do, from an attitudinal point of view, is to look at the brain as just another part of the nervous system -- a nervous system that can be affected in a myriad of ways by MS. And it's important to remember that, just as people compensate for or accommodate a weak or uncoordinated or numb limb and continue living their lives effectively, so too do people in various ways compensate or accommodate for cognitive dysfunction and continue being competent, effective, powerful individuals.
There are a number of ways in which cognition is affected in MS. Here are some of them:
I. Attention/Concentration and Short-term memory.
This is probably the most common thing one sees in MS. It's often characterized by easy interruption in your train of thought. You're sitting in your cubicle at work, sorting out a tough statistical problem in your research and somebody looks in the door and tells you that it's raining outside....just what you needed to know, right? Normally, you'd just ignore it and go on with your work. But often with MS, that interruption will interrupt your entire train of thought, making it necessary to go back and start over, losing 30 or 40 minutes' worth of productive work. Another thing that frequently happens with this type of problem is that you can't concentrate on two things at once. You're trying to sit and read a journal while keeping track of the kids playing noisily in the room. You simply can't make sense out of the article. Or spouse comes in while you're fixing a broken light switch and asks you to pick up Geordie at his soccer practice at 3:00 while she's taking Samantha to her flute lesson. They come in at 4:00 and she asks you where Geordie is...you "spaced" the information and you feel terrible as you rush out the door to look for your son.
There are some specific ways to deal with this type of problem. One simple job accommodation is to give a person a private office and phone that can be transferred to phone-mail when one is working on a project. This is not at all unreasonable and is perfectly justifiable when this specific cognitive disorder is identified. Another useful accommodation is the sacred Post-it Note.
Setting a timer or alarm clock that will have to be turned off and attaching one of those little sticky pieces of paper to it with a reminder of the task that needs to be completed at that time is something I do a great deal in my household (where nobody has MS). It's a particularly useful trick if you do tend to lose track of time and have some memory/concentration problems. In the computer age, it's wonderful to have these devices that "ding" you and tell you what you need to do at what time. Obviously, there are a number of other manifestations of this problem, and at least twice as many ways of effectively dealing with it.
II. Information Processing.
There's some evidence that some folks with MS require a longer time to digest new material...they may not be able to take in information as quickly. Also, it may take longer to process information and formulate the proper response. This may put one at a disadvantage at business meetings or deciding whether to let the 16-year-old have the car on Friday night. (Having a 16-year-old right now, I can assure you that the complexity of this decision and all the data that goes into making it is not to be underestimated.) Any situation where one has to think quickly "on one's feet" will often be uncomfortable for a person who exhibits information processing problems.
The most usual accommodation here is to allow more preparation time and to avoid situations where quick processing is imperative. Just because you can't think quickly, it doesn't mean you can't think effectively or profoundly or cleverly. It's important to realize this and not discount a person's effectiveness overall because of inability to function at lightning speeds.
III. Executive Functions.
We all have many, many thoughts and emotions rattling around in our heads all the time, and one of our important automatic cognitive functions is choosing which of those we're going to concentrate on and express at the moment, and which we're going to push to the background of our consciousness. A few individuals with MS have some trouble organizing and prioritizing thoughts, controlling expression of emotions, and changing topics of thought. This can make it difficult to deal with others sometimes, and not to seem "strange" or "weird". When this happens, a person can often compensate quite effectively by understanding what's happening and developing a voluntary executive ability where the automatic one has been lost. Of course, all this takes some energy and training.
Of course, people with MS often have visual problems. Another problem that sometimes happens is an additional problem in making sense of what one sees. This might be characterized by being unable to find the blue socks or the egg beater in a drawer (hopefully different drawers) when it's in with a great many items and staring right at you.
Although many people who have MS experience speech difficulties, it's usually more on the basis of not being able to form and put together words quickly in a coordinated fashion than not being able to think of the right word to say. Occasionally, however, this does happen, and a person will know exactly what he wants to say, yet not be able to think of the right word.
VI. Intellectual function.
This seems to be often the least affected cognitive function in MS. That is, the abilities to reason, learn and make appropriate conclusions and judgments are the least affected. People with MS seldom lose their ability to perform on intelligence tests, except where speed in performing math problems is required. So, while performing long division by hand may be a problem, understanding of numbers concepts and mathematical problem-solving is unimpaired.
VII. Things that add to the confusion....
Fatigue, depression, and stress can often cause the same kinds of cognitive difficulties described above. And what could be more stressful at times than dealing with MS and trying to manage work, parenting, community activities, financial security, and remembering to take out the garbage?
So...how do you deal with these issues? First, it's probably a good idea to get them defined specifically. A psychologist with a good understanding of the physical, psychological, and social consequences of MS can be immensely helpful, both in defining the problems and helping come up with ways of coping with them. Often professional help in the workplace can be vital in keeping a person on the job. Frequently, families need some support and education around how to help their family member with MS. They need to understand that the things that they are seeing are often part of the disease rather than a volitional issue of not caring or not listening. And lastly, the individual with the cognitive impairment often can benefit from education and supportive counseling around issues of stress, depression, self-worth, and coping.
One of the most disabling things about cognitive issues in MS is not having a good understanding of what's happening. YOU AND THE PEOPLE AROUND YOU NEED TO KNOW:
If the quantity of your work output is going down, it's not because you're goofing off.
If you forget what your spouse just told you, it's not because you don't care.
If you wore your brown socks with your black pants because you couldn't find the black ones, it's not because you didn't look.
If you can't keep up with the thread of conversation at a big meeting, it's not because you're not interested or can't understand.
If you can't make a decision quickly, it's not because you're indecisive.
If you can't beat everybody else out with the answer at "Jeopardy", it's not because you're stupid.
If you can't always express your ideas and feelings, it's not because you don't have them