Missing In Action

Coping With Memory Loss in MS
by Laurie Long, November 2003

You're at work and someone calls to schedule an appointment. While you figure out a good day and time with the person on the phone, you are also hunting for your daytimer (which you could have sworn was on the desk five minutes ago). You wrap up the call, still looking for the daytimer. Aha! There it is - buried under a pile of papers. A co-worker comes by and chats for a minute, then leaves. You wave goodbye and look blankly at the daytimer in your hand. Uh, oh. What were you supposed to be doing with it?

Has this or something like it happened to you? It happens to everyone now and then, but for someone with MS who has cognitive dysfunction, struggling against memory loss and other cognitive problems can be a constant battle.

According to different sources, anywhere from 43% to 70% of people with MS are affected with various cognitive problems, including memory loss. 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.

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.

Some of the other cognitive areas that can also be affected are concentration, learning, adapting to new situations, creative problem solving, conceptual reasoning, decision making, error correction and planning. Not all of these functions may be affected equally (or at all). Because cognitive issues are so varied, we will focus on memory and how to augment it, although many of the ideas used to help memory may also assist with other cognitive functions.

Things that Make Memory 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.

Retraining the Brain to Compensate

There are a number of compensatory strategies individuals can use to cope with mild cognitive problems. These include memory aides such as writing down all appointments, making checklists, or using memory "tricks" (e.g., visual images or rhymes) to help remember. Practicing concentration and focus when listening will also minimize distractions and help retain new information.

Calendars and daytimers are invaluable for helping you keep track of what is going on in your life. Not only should your write in all appointments and upcoming events in your life, but also reminders of things that need to be done by a certain date or time. Be sure to give yourself enough advance notice for things that need to be done. If the job is something that may need extra effort, write it on a small sticky-note and place it in your daytimer/calendar several days in advance of when it is required. If you can't get to it one day, you can move the note ahead to the next day, or the next (as long as you finish it before it is due). Keep your daytimer with you everywhere you go.

In-depth calendar keeping will also allow you to look over upcoming tasks and appointments and get an idea of whether or not you are overbooking yourself, or overtaxing your energy.

Organization is key. Taking the time and trouble to organize is less time consuming than the effort wasted trying to find things that are misplaced. Train yourself to keep important items in one consistent location. If your memory is exceptionally troublesome, write a list noting each object and where it should be. Tape the list to your refrigerator. Keep your address, phone number, and license plate written down in your wallet. This will not only help someone to return the wallet to you if you happen to lose it, but will help you in filling out forms or giving out that information when your mind suddenly draws a blank.

Clear the Clutter: Keep the clutter to a minimum. More clutter means less space, and greater difficulty finding lost items. Do you really need 10 years' back issues of National Inquirer? Or Aunt Mabel's collection of 1950s lamp shades? Get rid of them! Cleaning house clears out the clutter, both symbolically and literally.

Be Consistent: If you have to keep something, store it in a logical location and always return it to that same place. Your memory will have a better chance of working if you reinforce it using consistent locations for items.

Back it Up: Make sure you keep backup copies of important documents, keys, your reading glasses and other critical items in a safe place.

Do it Now: Don't put necessary tasks off for "some other time". If you can't get to the task right away, schedule it on your calendar or in your daytimer.If you suddenly think of something you need to remember - write it down right away! Don't wait even a single extra minute to pull out your pad and pen. Catch that thought before it flies away!

List It: Make yourself To-Do lists so that you can keep track of tasks that need to be done. Keep them in places where you will be able to see them.

Label It: You can store things in reusable storage boxes with lids, and keep track of what is inside each box by taping a running list of items to the top. Any time you add something to the box, add it to the list. Anytime you remove something (permanently) from the box, scratch the item off the list.

Tape It: Keep a small tape recorder to capture important conversations, doctor's appointments, etc. You can also use it to create memos to yourself if you find note writing difficult or bothersome.

Check It Off: Your task is finished - congratulations! Are you going to remember that tomorrow? Then check it off of your To-Do list!

Highlighters: Use highlighters in different colors to emphasize important parts in a document or to color code papers to help you organize.

Organizing Papers: If you are organizing papers, make sure the subject is on the top of the page. If it isn't there, or is not clearly visible, write it across the top. Then, when you are looking for things from a specific group - taxes for example - you will be able to quickly identify what you are looking for.

Ask for help: If someone asks you to do something and you think you're not going to remember, ask them to write you a note with the request and stick the note on your schedule.

Hide and Seek: Wait! Don't tuck that paperwork away until it's done. Remember - out of sight, out of mind.

Interruptions: If you are interrupted in the middle of a task or something that you are reading, take a moment to jot down where you are and what the main points of your task/article/book are. This will help jog your memory once you have dealt with the interruption and have returned to your original task.

Spell It Out: Don't be afraid to stop people and ask them to repeat information or spell things out for you. Make sure you get all the information you need to receive and then repeat it back to the other person to be sure that what you heard is what they actually intended to convey.

Mnemonics: These are tricks to help your memory, such as using songs, associative names or rhymes to help you dredge up that name that is "on the tip of your tongue".

Clear Your Mind: Many difficulties people with MS experience with keeping on track, remembering, and following through on tasks are magnified by too much complexity in their lives. Help your focus and relaxation by practicing such techniques as meditation, tai chi, yoga, chi gung and general exercise to relax the mind and body.

Break It Down: Some task overwhelming you? Break it down into manageable pieces and do them one at a time.

Tips for the computer geeks and Internet surfers: Use the address book in Outlook. Use the Explorer directory/subdirectory systems to organize files. Use your browser's bookmarks/favorites to mark useful Websites. Use the reminder function on Outlook or its equivalent.

Procrastination: Don't procrastinate. Reorganize, reschedule, rework, but don't just leave things hanging.

Overloading: Everyone has a different overload point, beyond which the camel's back breaks. Determine that point and do whatever necessary to reorganize your life to keep from overstepping those boundaries. Overloading causes stress, breakdowns and jeopardizes relationships at work and at home.

Plan Ahead! If your memory and cognitive skills are faltering, you can no longer get by "winging it". Plan things out and plan ahead.

Routine, Routine, Routine: Routine can aid your memory by establishing a set series of tasks, taking the guesswork out of things. Keeping to a routine helps train your memory by constant repetition.

Your Environment: Having a telephone conversation? Writing a letter? Then turn off the TV or radio, let out the dog, send the kids out to play and get rid of the distractions. Then you can focus on the task at hand.

The Four "Rs": Having trouble remembering what you read? Or even understanding what you read? Try using the 4 Rs - Read, Reread, Reorganize, Review!

First scan the headlines, pictures and first and last paragraph to get a general idea of what the article is about. Read each paragraph aloud - the more varied language aspects you can include (seeing, saying, hearing, writing) the better. Reread the entire article, highlighting and making notes. Reorganize the article by putting it into your own words. Try to develop opinions and personalize the information. Review the article with someone else and discuss the different aspects. By using these techniques, you can assist those parts of your brain that are not functioning correctly by bringing in other parts that are.

Drugs that Help

There have been a handful of studies to date on whether the ABCR drugs, which are used to slow progression of the disease, also help to ward off cognitive problems. A study in November of 2000 by Jill Fisher et. al. of the Cleveland Clinic with Avonex showed that Avonex did have a positive effect on cognition. A smaller scale study involving 30 subjects at the University of Chicago also showed some positive neuropsychological effects with Betaseron. A 1999 study regarding the use of Copaxone and cognitive problems did not find any positive effects.

Most drugs specifically for memory loss that are currently on the market or in the process of being developed are focused on Alzheimer's disease. Because Alzheimer's degeneration of memory and cognition is different from that of MS, not all of these drugs may be suitable for loss of cognition in MS. Small trials of Aricept® (donepezil) on people with MS have shown modest improvement in cognition and memory, but larger trials are needed to confirm its benefits.

Alternative Medicine

In his book, "Alternative Medicine and MS", Dr. Alan Bowling discusses various alternatives to conventional therapies. Of those that deal with cognitive and memory problems, he found that Ginkgo Biloba extract, which has been studied for its potential use in treating cognitive difficulties in the elderly, has not to date been directly studied for treating MS associated cognitive difficulties. Limited studies with cooling (to relieve heat related MS symptoms) and with electromagnetic therapy have indicated some beneficial effects on cognitive symptoms.

Therapies such as relaxation techniques, yoga, tai-chi, massage, meditation and exercise help reduce the stress which exacerbates many MS symptoms, including cognitive problems.

Brain Exercises

You exercise your body to keep it functioning. Why not exercise your brain? Scientists have discovered that intellectual stimulation can significantly increase the number of brain cells in crucial regions of the mind. Activities which engage your brain and challenge it can help to keep your mind "exercised". Here is a list of activities to stimulate your brain and keep it active.

Board games
Crossword puzzles
Books on tape
Card games
Reading
Watching TV news or game shows

Websites to Exercise Your Brain (from the Kingshill Research Centre Links Page):

Brain Power Club
http://www.msoworld.com/brain/index.html
Information on the brain, memory and memory aids

BrainBashers
(http://www.brainbashers.com)
A resource of over a 1000 games, puzzles and optical illusions to sharpen your wits.

Human Memory: What It Is and How to Improve It
(http://www.cerebromente.org.br/n01/memo/memory.htm)
An introduction to memory, how it works and how to improve it.

The Grey Labyrinth
(http://www.greylabyrinth.com/)
Mind bending puzzles to exercise your brain.

The Memory Page
(http://www.thememorypage.net)
A personally developed approach to memory by a hobbyist that others have found useful. The site includes tutorials, tips and tricks and memory games.

Helpful Gadgets and Memory Aids

Daytimer
Calendar
Alarm
Cassette recorder/Dictaphone
Pen and pad
Pocket electronic organizer
Dry-wipe message board
Pill organizer (some come with alarm reminder systems)
Computer
Organizational software programs (i.e. Outlook, personal infomanagers, Quickbooks)

One Step at a Time

Does this seem like a lot of ideas, gadgets and techniques to try to incorporate into your life? You're right - it is! Don't try to do it all at once. Break it down into manageable pieces in order of their importance. Add those pieces to your routine one at a time, giving each new technique sufficient time to become habitual before adding anything else. Keep adding until you have enough tricks in your repertoire to compensate for the areas that MS has impaired.

If even this feels overwhelming, it may help to work with an expert (Occupational Therapist, Speech Pathologist, Neurologist) to train yourself in these new techniques, just as you would work with a physical therapist to assist you with a physical difficulty. A neuropsychological evaluation will help assess your cognitive strengths and weaknesses and provide you and your neurologist a starting point and focus for your retraining.

Neuropsychological Evaluation

A neuropsychological 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. The neuropsychologist can then make recommendations to help the person compensate for their specific problems, or refer them to other counselors for cognitive retraining. These tests are also extremely useful for establishing cause when applying for Social Security Disability. There is a long test and a shorter test series. The long test is often used for establishing grounds for SSDI. The shorter tests are used to assess whether a cognitive problem exists and to determine the specific areas of difficulty. These tests (both long and short) are sometimes, but not always, covered by insurance. Coverage is determined by individual carrier and the specific circumstances. (Note: For listings of Neuropsychologists and Centers for Neurological and Cognitive Rehabilitation and Retraining in the Seattle area, call us at 206-633-2606.)

Advice for Caregivers and Families

It is important for caregivers and families of the person with MS to understand that it is not laziness, or thoughtlessness, or inattentiveness that is at the root of these difficulties. Everyone (including the person with MS) must acknowledge that problems with thinking, concentrating and remembering are the product of MS and work together to fill in the gaps that cognitive impairment has left. Sit down together and work out plans to reorganize the house. Figure out attainable goals for each member of the family necessary to maintain that organization. Try to avoid unrealistic expectations of the person with MS and don't overwhelm them with demands they cannot fulfill.

Once organization, expectations, plans and individual tasks have been rethought a new, more workable lifestyle can be created - one that meets everyone's needs without sacrificing dignity, independence or self esteem.

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.

Bibliography and References

Peterman Schwartz, Shelly.300 Tips for Making Life With MS Easier. New York: Demos Medical Publishing 1999.

Schapiro, Randall, M.D. Symptom Management in Multiple Sclerosis, Second Edition. New York: Demos Publications 1994.

Bowling, Allen C., MD, PhD. Alternative Medicine and Multiple Sclerosis. New York: Demos Medical Publishing 2001.

Kalb, Rosalind, PhD. Multiple Sclerosis: The Questions You Have - The Answers You Need, Second Edition. New York: Demos Medical Publishing 2000.

Murray, Ronald, MD, FAAN, et al. Multiple Sclerosis: The Ultimate User-Friendly Guide, Second Edition. Englewood, CO: Center for Neurological Diseases/Rocky Mountain Multiple Sclerosis Center 2001.

Pepping, Mary, PhD., Hughes King, Carol, OTR, Stroutsos, Alice, MS-CCC. "Coping With Memory Problems" course. Virginia Mason Medical Center.

Fairfield, Teresa, OTR. "Coping With Memory Loss" conference. Virginia Mason Medical Center.

Crickmer, Ann, MSW. How Can You Live When You Can't Even Think? MS Association of King County, 2000.

Crickmer, Ann, MSW. Cognitive Function and MS: Research Updates 1998.MS Association of KingCounty,1998.

Crickmer, Ann, MSW. Exercising Your Brain. MS Association of King County, 1999.

Stoneham, Laurie. Cognitive Problems: Research and Real People. Real Living With Multiple Sclerosis. October 1995, Vol 2, No. 11: 1, 4-8.

Stoneham, Laurie. Jiggling Your Memory. Real Living With Multiple Sclerosis. July 1997, Vol 4, No. 7: 1, 13,14.

Heywood, Marina, PhD. A Neuropsychologist's Perspective on Memory and MS. MS Society of Victoria, Australia Newsletter. Autumn 2003.

Rickey, Tom. Doctors Test Memory Drug for Multiple Sclerosis Patients. University of Rochester Medical Center Press Room.6/13/01.

Langdon, D.W., PhD and Thompson, A.J. MD, FRCP. Cognitive Problems in Multiple Sclerosis. The National Hospital for Neurology & Neurosurgery and The Institute of Neurology London, UK.

Rao, Stephen, PhD. Cognitive Impairment in MS: The Latest Research. UnderstandingMS.com Webcast transcript through Healthology.5/1/01.

International Organization of MS Nurses. Clear Thoughts on Cognitive Problems in Multiple Sclerosis. Teaneck, NJ2003.

University of California at San Francisco Multiple Sclerosis Center. Neuropsychology of Multiple Sclerosis. http://mscenter.ucsf.edu/psychology.htm

Kalb, Rosalind, PhD. Cognitive Problems in Multiple Sclerosis. MUSC - Multiple Sclerosis Clinic.

Rao, Stephen, PhD, et al, Cognitive Dysfunction in Multiple Sclerosis: Impact on Employment and Social Functioning. Neurology 1991;41:692-696.

Beatty, W., et al, Screening for Cognitive Dysfunction in Multiple Sclerosis. Journal of Neurological Rehabilitation 1996;9:167-173.

Foong, J., et al, Executive Function in Multiple Sclerosis: The Role of Frontal Lobe Pathology, Brain 1997;120:15-26.

Reyes, Ann, PhD, Memory Loss. Discoveryhealth.com 2001.

Kingshill Research Centre. Medication for Memory Problems.2002.

Krupp, Lauren, MD. Aricept in Multiple Sclerosis (AIMS). American Academy of Neurology 55^th Annual Meeting. April 2003.

Tuller, Dave. Race is on for drugs to save the memory. The New York Times 7/31/2003.