Thinking and Memory Problems in MS

According to different sources, anywhere from 43% to 70% of people with MS are affected with various cognitive problems, including memory. If you suffer from cognitive problems, you may be unwilling or afraid to admit them to your boss, your friends or your family. You may not even be aware of some of them. The people around you, not realizing these cognitive difficulties and memory lapses are caused by your disease, may think you are being lazy, or not paying attention, or are careless or thoughtless. Anger, frustration, self-doubt, irritation and depression can result from unacknowledged and untreated cognitive problems.

There are five types of thinking symptoms that are common in MS. It cannot be stressed enough that these problems are not related to intelligence. They are organically caused by the disease, just as motor symptoms are. It is essential that family, friends and your physician really understand this fact.

Five types of thinking symptoms:

1. Short-term memory - Difficulty in retrieving specific words, in naming things; having the word on the tip of your tongue, and not being able to say it seems to be virtually universal in MS.
2. Attention/concentration problems are common - difficulties in focus, concentration, maintaining and shifting attention as needed especially when information is coming at one very rapidly. It is difficult to filter out background noise. An interruption can mean the loss of an entire train of thought, making it necessary to go back and start over. Multitasking may not be possible; you may be able to concentrate on only one thing at once. This also includes trouble formulating thoughts: you may not be able to make sense out of what you are reading, or follow a television show, or a conversation. It may be possible to "track" only part of what you observe or are told. Listening to verbal reports, lectures, and meetings is hard. It is difficult to consolidate new information in a meaningful way. Scheduling time and estimating how long it will take to get a job done can be difficult.
3. Information processing may slow with MS fatigue. People with MS may require a longer time to digest new material, and may not be able to take in information as quickly. Also, it may take longer to process information and formulate the proper response. Any situation where you have to think quickly "on your feet" will often be uncomfortable. The most usual accommodation for the person with MS is to allow more preparation time, and to avoid situations where quick processing is imperative.
4. Narrowing of the cognitive capacity for choice - the ability to perform complex tasks such as planning and carrying out activities in the proper order, completing tasks in a timely fashion, solving problems and monitoring your own behavior can be affected by MS lesions.
5. Of course, people with MS frequently have visual problems. They may also have problems making sense of what they see when multiple sources of information come at them at once. However, visual and spatial difficulties are less frequent than the first four. Most people with MS can locate themselves geographically.

Cognitive Problems and Employment

It is important that your physician document a history of these symptoms as soon as they appear, in case you should ever need to apply for disability entitlements. A neuropsychological evaluation may also be necessary to document these symptoms. The evaluation consists of a series of tests of concentration, memory, problem solving, visual-spatial skills and language. The tests will determine the individual's cognitive skills - both weak and strong. Cognitive impairment is the most common reason that people with MS become under or unemployed. Stephen Rao, PhD, an expert in cognitive research and MS, explains, "Now we recognize that patients who have cognitive problems are much less likely to be working, much less likely to engage in social activities and need more personal assistance than patients who don't have MS." A study on cognitive issues in MS by Beatty et al, 1995, states, "People who were still employed were impaired in significantly fewer cognitive domains. Those who continued to work despite global cognitive deficits had spontaneously adopted strategies to compensate for their physical and intellectual limitations. These include faithful use of tape recorders, as well as other mnemonic strategies, careful scheduling of work or classes to minimize the impact of fatigue and lapses in concentration, and substantial job restructuring in collaboration with their employers.

For people with MS who suffer from cognitive difficulties, strategies and tools to compensate for these deficits are not just useful - they are essential to the maintenance of their lifestyles, their relationships, and their self-esteem.

What Causes Memory and Cognitive problems in MS

Brain and spinal lesions generated by MS may cause you to lose control in your hands or your feet, or create a host of other physical symptoms. When lesions arise in the cerebral hemispheres of the brain, they cause cognitive problems. Brain atrophy can also cause cognitive dysfunction and difficulty with memory. We think of memory as a single concept, but our brain organizes different types of memory differently. With MS, remote memory, or memory from your distant past, is much less likely to be affected than recent memory, such as what you had for dinner last night or what someone told you five minutes ago, or prospective memory, such as your promise to pick up some bread at the store on your way home.

Things that Make It Worse

Many things can adversely influence your memory or cognitive abilities from one day to the next, but some of the most common culprits are:

• Fatigue

• Sleep problems

• Depression

• Stress

• Heat

• External distractions

Fatigue, depression, heat problems and sleeping problems are all potential MS symptoms. Stress is also common with MS. Not everyone with MS will suffer from one or more of these, but for those that do, there is an increased probability that existing cognitive problems will be exacerbated.

Compensatory Strategies

1. Frank acknowledgment of problems prevents misunderstandings (it doesn't help to pretend you can follow the conversation if you are having trouble.) Let the other person know what you need in order to participate successfully in the conversation. In discussions with your physician, in particular, make sure you understand what they are explaining.
2. Labeling feelings with a trusted companion lets you step outside the anger and frustration. This helps us to learn to separate our worth from the physiological response of emotion. Enlisting family and friends to help you by mirroring and naming the emotions you are experiencing will help you to control your emotional response and the resultant cognitive confusion you experience.
3. Imposing a delay and quietly organizing your thoughts before speaking often helps verbal expression and communication. Use a beginning, middle, and end format to help stay on topic.
4. Listening to music doesn't require the focus and concentration capabilities that reading or watching a TV program do, and can provide a great deal of sensory stimulation. Mental stimulation of all kinds is important to maintain cognitive skills.

Increase Structure in your Life:

1. Maintain a consistent daily schedule.
2. Fatigue management - use best times to do most demanding work.
3. Heat management - many say that their thinking is worse when overheated.
4. Organizing and documenting - consistently use a family calendar, paper and pencil organizers, post-it notes, diary, setting timetables, etc. to keep track of your life.
5. Minimizing distractions to help regulate attention (ex: turn off TV).
6. 4 Rs: Reading techniques - Read, Reread, Reorganize (who, what, when, where, and how), and Review. Talk to a friend about it: use as many senses as possible - seeing, saying, hearing, and writing.
7. Environmental support - get help with bill paying and check writing (banks and special agencies may provide automatic bill-paying services for a fee).

These are just a few of the tips and strategies used to take control of cognitive and memory symptoms. If you would like to discuss cognitive/memory problems and solutions, call the MSA at 206-633-2606.

This article is a compilation of several previous including, "How Can You Live When You Can't Even Think?" by Ann Crickmer, "Cognitive Functions and MS: Research Updates" by Ann Crickmer, and "Missing In Action: Coping With Memory Loss in MS" by Laurie Long. Copies of the original articles can be obtained by calling the MSA at 206-633-2606.

Was this information helpful? Then please consider making a donation. We are a small, independent nonprofit agency and are dependent on donations from our supporters. Thank you from all the staff at the MSA.

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The Multiple Sclerosis Association of King County
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Phone: 206-633-2606      Fax: 206-633-2920
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