Reviewed and edited by Pat Bednarik, MS, CCC-SLP, MSCS
Multiple Sclerosis Center at the University of Pittsburgh Medical Center
Cognitive Changes with MS
Traditionally, cognitive issues were not believed to be a symptom of MS. In more recent years, researchers and physicians have come to find that roughly half of the MS population will experience some type of change in their cognitive abilities during the course of their disease.
The term “cognition” refers to a group of mental processes such as information processing, language, memory, visual perception/spatial skills, calculation skills, and executive functions (LaRocca, Sorenson and Fischer, 2000). These may be described as follows:
- Information-processing skills affect our ability to focus, maintain, and shift our attention from one thing to another without losing track of what we were doing, as well as managing incoming information quickly.
- Language refers to the ability to understand and use language appropriately in daily situations.
- Memory is a complex set of skills that involve learning, storage of information, and the ability to retrieve that information on demand.
- Visual perceptual/spatial skills allow us to do things such as recognize objects, draw, assemble things, and find our way around.
- Performing simple and complex math skills are involved in calculation abilities.
- Executive-functioning abilities enable us to get through our day by overseeing and coordinating tasks such as organization, planning, sequencing, problem solving, judgment, reasoning, monitoring our own behavior, etc.
The most commonly affected cognitive processes in MS are speed-of-information processing, memory, and executive functions. Other domains of cognition can also be affected depending on where lesions are located. However, rarely are all domains of cognition impacted by MS. Changes in cognitive abilities typically are clinically considered mild-to-moderate in severity, although even mild changes can be annoying and irritating in day-to-day functioning.
It’s best to keep in mind that not all difficulties with cognition are a result of changes to the brain. Some brief examples of other influences on cognitive functions can be medication side effects, lack of sleep, depression, anxiety, stress, and fatigue. (Larocca, Sorensen and Fischer – Multiple Sclerosis: The Questions You Have – The Answers You Need, second edition, edited by Rosalind Kalb, published by Demos 2000.)
Strategies to Help Cope with Cognitive Issues
In the book, Multiple Sclerosis: A Self-Care Guide to Wellness, second edition (edited by Nancy J. Holland, EDD, RN, MSCN and June Halper, MSCN, ANP, FAAN; published by The Paralyzed Veterans of America and Demos Medical Publishing, LLC, 2005), one section is devoted to “Coping with Cognitive Changes.” It lists the different types of cognitive functions that may be affected by MS, which include difficulties with the following:
- Abstract reasoning
- Information processing
- Visual and spatial organization (such as driving or reading a map)
- Ability to shift between tasks
- Attention and concentration
- Organization and execution of complex sequences
To enhance one’s ability to concentrate, this book recommends: identifying (and avoiding) distractions; establishing quiet time; determining a time when you are at your best and using that time to perform more complex tasks; learning energy-saving and pacing strategies; finding out how long your attention span can last and taking breaks while working when you know that your attention is no longer sharp; and breaking tasks down into sections so you don’t have to complete a task all at once. Puzzles, meditation, and reading can also help enhance your ability to concentrate.
If having trouble processing information, ask those around you to not speak as quickly, allowing you time to assimilate the information. By letting family and friends know what is going on, they will be able to help you to cope with the cognitive challenges you may be experiencing.
If having trouble finding a certain word, the best idea is to wait and let the word come to you later. You may also try to talk more slowly, allowing yourself extra time to process information. Additionally, if you study and expand your vocabulary, you may have synonyms at your disposal to substitute for the words you can’t find.
Other important strategies include getting organized. This can help substitute for any lapses in memory. For instance, use a journal and/or a calendar to help keep track of things you need to remember and appointments you need to keep. Use checklists for shopping and other tasks. Select a central place in your home to keep things that are easily lost – such as glasses and keys – to help avoid the frustration and wasted energy of searching for lost items.
Another very helpful resource is Shelley Peterman Schwarz’s second edition of her book, Multiple Sclerosis: 300 Tips for Making Life Easier (published by Demos Medical Publishing, LLC, 2005). In this edition, Ms. Schwarz presents tips that cover all the basics: from issues around the home and managing meals, to taking care of yourself, handling medical issues, and even travel.
The book also includes a section on improving memory and concentration. Among others, some of her tips include:
- Write reminders (self-adhering Post-it® notes may be helpful) and put them where easily seen.
- Keep a small spiral notebook and a small pen or pencil with you to jot down things you need to remember.
- Use a gardener’s apron while at home; it has big pockets and can carry the small notebook and other items (glasses, phone, etc.), allowing you to work “hands-free” around the house and conserve energy by not having to take extra steps to retrieve things.
- If you like gadgets, an electronic
organizer (also known as a personal data assistant or PDA) can keep addresses and phone numbers, appointments, notes,
to-do lists, etc.
- Your computer or cell phone can be programmed to alert you when you need a reminder for taking medicine, performing a task, or attending a meeting.
- If you have trouble remembering if you have done a task, remind yourself by speaking out loud; for example, when leaving the house, say, “I’m locking the door,” out loud, and this may help your memory.
- When running errands, plan your route in advance and write down the stops you need to make in sequence; this will help you to remember everything you need to do, saving time and energy.
- If you are out and need to remember something to do when you return home, call and leave yourself a message on your answering machine.
Focusing on the experiences one goes through with changes in cognitive function, Facing the Cognitive Challenges of Multiple Sclerosis (written by Jeffrey N. Gingold and published by Demos Medical Publishing, LLC, 2006), is an excellent resource. This book tells how the author came to find he had MS, and how he tried to conceal and cope with cognitive issues as well as other MS symptoms. Incredibly, he was trying to conceal these issues while working as a lawyer and continuing his roles as a devoted father and husband.
While telling his story, Mr. Gingold talks first-hand about the thoughts that went through his mind as he would unexpectedly encounter a lapse in memory, an inability to recall words, or find himself lost on a familiar road. He includes details about the other symptoms he was experiencing, consulting doctors, going through the different tests involved with MS, and taking medication.
When taking a different path, his advice includes: if retiring from a career, choose to do something different that is challenging and interesting; don’t think you are without options – many choices are available; keep your mind active by reading books, keeping a diary, and doing crossword puzzles to challenge your mind; sometimes you need to say “no” to requests from others to maintain clear thinking; ask for clarification, reminders, and direction when in a confusing situation; pause, relax and breathe calmly when having a temporary lapse in thinking; limit visual distractions and remove clutter from your home; and keep lists of daily responsibilities and activities.
Please note that all four books mentioned above: Multiple Sclerosis: The Questions You Have – The Answers You Need; Multiple Sclerosis: A Self-Care Guide to Wellness; Multiple Sclerosis: 300 Tips for Making Life Easier; and Facing the Cognitive Challenges of Multiple Sclerosis, are all available through MSAA’s free Lending Library. Please see page 64 for ordering information.
Cognitive Testing and Rehabilitation
A baseline cognitive evaluation is important and can serve as the basis for a comprehensive management strategy by identifying cognitive strengths and weaknesses. This testing procedure is generally administered by a neuropsychologist or other specialist (speech-language pathologist, occupational therapist, or psychologist) depending on the types of suspected problems as well as regional availability and practice of each discipline.
A variety of strategies have been designed to help improve cognitive function. These range from keeping simple task lists, to planning how you use your time to take on more complex tasks when you are at your best, to more advanced computerized programs designed to improve memory and other cognitive issues.
The results of a study on cognition were reported at the AAN’s annual meeting in 2008. This study measured improvements in general memory, working memory, and processing speed in people who participated in a targeted cognitive rehabilitation program, compared to those who did not participate in a program. The results suggested a clinically statistical improvement. A recent study from Israel suggested that a computer-based cognitive training program (MindFit®) led to an improvement in memory skills in people with MS.
Other Options to Protect or Improve Cognition in MS
One of the best ways to maintain cognition is to do your best to avoid new lesions by taking a disease-modifying therapy (if you have a relapsing form of MS). A number of studies with these drugs have shown some benefit on protecting cognition. Ten disease-modifying therapies are now approved for use by the United States Food and Drug Administration (FDA) for relapsing forms of MS. Please visit MSAA’s website at mymsaa.org for specific information on
these approved therapies.
Memory Medications and Supplements
People with MS and MS clinicians have hoped that medications such as those that help people with Alzheimer’s disease might also benefit people with MS. Some of the Alzheimer’s disease medications work to block the enzyme that breaks down the nerve signal messenger acetylcholine. This is the same chemical that is blocked by the bladder medication Ditropan® (oxybutynin). Although early reports suggested that the medication Aricept® (donepezil) might help cognition in MS, more thorough study has not proven this drug to be of benefit.
Additional studies of the Alzheimer’s medications Exelon® (rivastigmine) and Namenda® (memantine HCl) also did not demonstrate a clear benefit. Some side effects may include stomach or bowel problems, mood changes, and urinary difficulty. Others had hoped that the herbal extract ginkgo biloba would be of benefit, however, preliminary studies have not demonstrated a benefit. Many other supplements are often promoted to help memory in the general population, but hard data is very limited even for people without MS. Discuss any drugs or supplements you may be taking with your healthcare team.
Treatment of Fatigue and Weakness
Treating fatigue when present may reduce its effects, but does it help memory? This is a difficult area to study due to the difficulties in measuring and documenting cognitive changes, as well as the subjective nature of fatigue management. Small trials of amantadine (previously Symmetrel®) used for fatigue have not been convincing for cognitive improvement. The medication Provigil® (modafinil) and Nuvigil® (armodafinil) are commonly used “off label” for MS fatigue and have also been used by some with attention disorders. Ampyra® (dalfampridine), studied in the 4-aminopyridine form also did not demonstrate improvement. Management of fatigue by both pharmacologic and non-pharmacologic means may be tried by some, and may include occupational therapy for energy-conservation techniques.
Hope for the Future
While there is currently no proven way to return the brain with its complicated pathways and connections to normal, researchers are actively involved with studying different methods to promote the survival of damaged brain structures, repair and regrowth of myelin, and even regrowth of nerve (axon) cells. While these future options may help, we already have ways to minimize the onset of cognitive problems. These include the ability to avoid aggravating factors, manage the challenges they present, adapt to these changes, and employ strategies to overcome cognitive issues whenever possible.