and Perceptual Problems in MS
By Catherine W. Britell, M.D.
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.
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
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.
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
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,
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
If you forget what your spouse just told you, it's not because you don't
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.
This material is provided as general medical information and is not intended
as advice for individual patients; please contact your physician for specific
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