The cognitive impact of MS on everyday living is often overlooked, because cognitive difficulties are so much less visible than physical symptoms. Cognitive factors can have their own separate effect on people’s lives, above and beyond the physical restrictions imposed by MS. A person with cognitive difficulties is less likely to be employed and more likely to cease employment in the years ahead. Similarly, the number of social contacts is likely to be less and to reduce in the years ahead. Cognitive problems can mean that a person is able to do less well in physical rehabilitation. Because of these and other impacts, people whose experience of MS includes cognitive dysfunction need information and support.
If a person with MS feels that memory and concentration are not as good as they used to be, the person may find it hard to admit that this is happening as part of the MS. This is entirely understandable, because we tend to think of our mind as a perfect whole. For some people, it reflects their spirit or soul. Any changes or lapses, such as forgetting a word we want to say or missing an appointment, can seem to cast doubt on the whole mind or the whole person. Cognitive problems do not mean that a person’s spirit or soul is lessened or involved in any way. Instead, cognitive difficulties occur when MS affects the areas of the brain that control memory and concentration.
Cognitive symptoms are very much like physical symptoms. Just as a person with stiffness in the legs may have difficulty walking, but still be able to walk to the nearby shop, so a person with cognitive difficulties may need to take longer to read a book, but can still enjoy doing so. Similarly, as walking may vary during the day or over periods and be influenced by fatigue, so too can cognitive skills fluctuate at different times and be blunted
by fatigue.
For most people with MS who have cognitive symptoms, some types of thinking are affected, but not all and not uniformly. Everyone, whether they are healthy or ill, experiences difficulties such as unintentionally substituting one word for another or suffering a memory lapse, but because these difficulties occur more often for some people with MS, they start to impact on daily life.
Cognitive problems may be noticed by family. Sometimes family members can find it hard to talk about cognitive difficulties, because of embarrassment or fear. However, in a trusting, positive relationship, talking about cognitive problems is often the first step to constructive help. It may be that the family observes the effects of cognitive problems in MS, but mistake them for something else. For example, a person with MS who always forgets to feed the cat whilst their spouse is at work might mistakenly be thought by their spouse to be deliberately unhelpful with household chores and unappreciative of the load that the spouse is carrying to support the person with MS in the home. In fact, the real reason for not feeding the cat is simply that the task slips the mind of the person with MS, and it slips their mind nearly every day, as a result of their MS. In this situation, a small reminder such as an alarm, a note stuck on a door, or a phone call, might be enough to help the person with MS feed the cat routinely and possibly complete other tasks as well.
Colleagues at work may also be aware that things are not going well. Again, being able to talk with the person with MS about their particular difficulties can lead to solutions. For example, a person with MS who is working as a gardener may not be completing her daily planting tasks, despite being given clear instructions for the day by her boss. Mistakenly, the boss thinks that the failure to finish all of the planting is due to laziness on the part of the person with MS. In fact, by talking about the problem, it becomes clear that the first few plantings are always done expertly and quickly. It is the later tasks that are not completed, because by the afternoon, the gardener with MS is finding it hard to remember the instructions. This could be solved by either taking notes of the instructions each morning, or possibly placing all the plants where they are to be planted, before any planting starts, to act as “prompts”. This helps the gardener with MS remember the morning’s instructions.
Talking about cognitive difficulties will usually be a source of relief to the person with MS and their family and may lead to easy solutions, but sometimes more expert help is needed. This may be because there are several factors involved, such as fatigue, anxiety or depression. Or perhaps the cognitive difficulties are interacting with the management of physical symptoms, such as bladder function or self-administered medication.
The simplest strategies for dealing with cognitive problems involve some physical aids, such as diaries or electronic journals. Others involve ways of thinking and organising facts so that they can be retrieved more reliably on demand. For people whose memory problems are more severe, it is helpful for them to learn to perform tasks without mistakes. Trial and error is difficult for them, because they find it hard to forget the wrong way of doing things and hard to substitute the new, right way. Small, early studies of this approach, known as “errorless learning”, have been promising.
Understanding and acceptance are vital for living well with cognitive problems in MS. The first step to constructive change is talking, to share one’s experiences of cognitive problems and solutions in MS. A positive, confident approach is likely to lead to good coping.
Medications that may affect concentration*
Chemical name Use in MS
Amantadine fatigue
Clonazepam tremor, pain, spasticity
Diazepam muscle spasms, spasticity
Fluoxetine depression, MS fatigue
Gabapentin pain
*It is important to keep an updated list of current medications and never to adjust or discontinue a medication without consulting the prescribing physician.
Simple ways to compensate for memory problems
• Keep a daily diary or notebook. Write down all appointments, reminders, and lists of things to do in one place. Tick things off once they are done. Get into the habit of referring to this diary routinely, perhaps at the same time each morning and again in the evening for tomorrow’s schedule.
• When you make or receive a phone call, note the date, time, whom you spoke with and a short reminder about what was said.
• Post a large family calendar in a prominent place, maybe the refrigerator door, where everyone in the household writes down their activities and schedules. Tick things off as they are completed.
• Use a wristwatch with an alarm, and set it to remind you of events. People who must take medication at certain intervals find this especially useful.
• Electronic gadgets like personal digital organisers are effective for lists, agendas, important phone numbers, and addresses. Or try other organisational tools such as index cards, or a portable computer.
• Place reminder notes in useful locations around the house or work place.
• Keep important things in a designated place. Keep your daily diary on your night table or next to the phone, your keys in a particular drawer or on a hook near the door. Consistency and routine make it easier to remember where things are.
• Design a master shopping list, with all the items you normally need, and make multiple copies. Before going out to shop, review the list and check off the items you’ve run out of.
Try to stay calm when memory fails. “It’s normal to tense up or feel frustrated if you are forgetting or losing something, but when you do, you switch out of the problem-solving mode and into the angst mode,” notes Dr LaRocca.
* Adapted from MS and the Mind - Memory and Problem Solving, by Martha Jablow, National MS Society, USA. www.nationalmssociety.org
“What you’re trying to do is replace memory with organisation.”
Dr Nicholas LaRocca
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