UCSF Multiple Sclerosis CenterIt is estimated that between 45% and 65% of all people with MS experience problems with memory, attention, word-finding, problem-solving, or other cognitive functions as a symptom of the disease. These cognitive changes can vary considerably from one person to another, both in type and severity. There is very little relationship between the severity of physical symptoms and the severity of cognitive problems. One person may have severe physical symptoms but no problems with cognition. Another person may be very physically fit but have severe problems with thinking and remembering.
Cognitive difficulties can be particularly distressing for people because they are changes that nobody sees. Sometimes family,loved ones, or employers will believe that a person’s forgetfulness or lack of attention are willful ignoring, rather than a symptom of the MS. Many times the person with MS may not recognize that their problems with memory, attention, word-finding, and problem solving are MS-related, and he or she may worry that he or she is going crazy. Understanding the type and the source of cognitive problems is the first step for patients and their loved ones to begin coping with these symptoms effectively.
Although the types of problems seen in people with MS can vary considerably, some problems are seen more frequently than others. Some people may only have problems in one area, while others may have problems in many areas. Below is a list of the types of cognitive problems many people with MS experience
Cognitive Fatigue Studies show that people with MS, even if they have no other cognitive problems, can get fatigued from doing mentally challenging work over long periods of time, even if they aren’t exerting themselves physically. Once cognitively fatigued, people with MS are more likely to work slowly and make errors than people who don’t have MS. When someone is physically or cognitively fatigued, any other cognitive problems he or she has usually worsen.
Attention and Concentration Usually attention for simple tasks is good. Yet, as the difficulty of the task increases, problems with attention and concentration are more likely to occur. Problems often occur when people with MS are asked to concentrate on more than one thing, as is the case in office environments or households with children. Often, people with MS who have problems with attention find that they can only work on one thing at a time in quiet, distraction-free environments, whereas before they could talk on the phone, work on their computer, and listen to the radio, all at the same time.
Processing Speed Many people with MS experience an overall slowing in how fast they can process information. Some people describe this situation as my brain slows down or there’s a lag between my thoughts.
Memory Memory is a complex neuropsychological function. There are at least two separate systems for memory. Procedural memory is the memory for how to do things. This almost always remains intact in people with MS. Thus, you may forget to do something, but you will not forget how to do it. Semantic memory is the memory for events, words, or things. This memory can be affected in MS. Usually, people with MS have trouble remembering recent everyday events or everyday events since the diagnosis. It’s less common to have trouble remembering earlier life events or important historical information, like when you graduated from college or your child’s first birthday party. There are three parts to semantic memory. First, you must be able to perceive and attend to information. If you cannot attend to information, because of problems with attention or concentration, you will not have a chance to encode or learn it, which is the next step in memory. Finally, you have to be able to retrieve or recall it when you need it. People with MS related-memory problems can have problems in all these areas, or in only one or two. Sometimes, people will have problems learning and/or remembering what they see, but have no problems learning and/or remembering things they hear. Other times, people will have the opposite problem. Some people will have problems learning and/or remembering information regardless of how it is presented.
Language The types of language problems most commonly seen are those related to language fluency. These include increased word-finding difficulty (where either the person with MS can’t find the word they want to say, or where they say the wrong word accidentally) and problems with naming, the ability to accurately recall uncommon words or the names of acquaintances. People with MS can also have problems with dysphagia or dysarthria, which refer to problems coordinating the movements of the lips, mouth, tongue, and throat. People with these problems may have slurred speech or physical difficulty saying certain words or syllables, without any cognitive problems at all.
Problem Solving Sometimes people with MS have increased difficulty solving problems in new situations. When confronted with a problem, people with this difficulty will tend to try the same solution over and over, rather than generating new solutions, or they may have difficulty making decisions because it is hard to identify which of a number of choices is best
Visual Spatial Skills Sometimes, people with MS find themselves getting lost more frequently, losing items more frequently, or having trouble understanding visual-spatial information like maps, diagrams, and charts.
Other Problems As with physical problems, the types and severity of cognitive problems vary considerably from one person to the next. Some people may experience emotional changes due to neurologic changes in the brain, such as suddenly bursting into tears or laughter without feeling particularly sad or happy. Some people also report brief periods of loss of awareness or feelings of disorientation.
If you suspect you may be having cognitive changes, the first thing to do is to discuss your concerns with your care provider. If problems affect your ability to work or perform routine daily activities, a neuropsychological evaluation may help determine the extent of your problem. A neuropsychological evaluation consists of a series of tests of concentration, memory, problem solving, visual-spatial skills, and language. This assessment will evaluate both the specific types of cognitive problems the person is having and the person’s remaining strengths. Knowing what the person’s problems and strengths are can allow the neuropsychologist to make specific recommendations to help the person compensate for problems they are having. For example, a person who has memory problems which are caused by problems retrieving information may be helped by developing systems to improve organization and increase the use of reminders. On the other hand, if the memory problems are caused by problems with attention and concentration, strategies designed to reduce distractions and improve the person’s ability to focus will be more successful.
A neuropsychological evaluation may also help improve relations with family and friends. When people attribute their cognitive changes to going crazy and/or loved ones believe the memory lapses are willful, the result is often a pattern of self-doubt and misunderstanding that is extremely stressful and painful. Information from such an evaluation can often be the first step toward repairing self-esteem, improving relations with loved ones, and developing adaptive coping strategies.
In some cases, a neuropsychological evaluation may also help the person with MS determine whether he or she is able to continue working. Cognitive problems are a better predictor of inability to work than physical problems, and neuropsychological evaluations may be required or recommended if a person becomes disabled due to the MS and needs to apply for disability benefits.
People with MS, as well as their families and caregivers, often confront a wide variety of physical and cognitive symptoms, changes in functioning, and psychological reactions, all of which require adjustment. For many people, this adjustment will continue periodically throughout one’s life. The symptoms and changes in functioning have already been covered in the handbook. This section will examine some of the issues associated with adjustment to MS and what people can do to cope.
A noted expert in chronic illness, Irene Pollin, has identified at least eight areas in which people can have difficulty adjusting to the changes illness can bring to their lives. Some of these areas may overlap, but most people experience all of these eight areas from time to time.
Loss of Control From the first symptoms of MS, many people feel they have lost anchors in their lives. During the course of MS, people can feel they have lost control not of their bodies, thoughts, or feelings. Maladaptive attempts to gain control can often lead to impulsive and dangerous actions, including making major life plans to try to control the anxiety such as leaving a job or relationship,seeking potentially dangerous or expensive alternative treatments, or ceding control of one’s life over to others. Often, a person’s task is to learn to identify these control issues, to manage effectively what can be managed, and to learn to adjust to what cannot be changed. Studies show that the ability to identify the areas over which we can exert control, and to be proactive in those areas is very important, but the ability to accept changes in the areas we can’t control and move on is equally important. The two together help people live well regardless of their diagnosis.
Self-Image Changes in self-image can be an important and difficult part of the adjustment process. Initially people must adjust their image of themselves from strong and invulnerable to a self-image that includes living with a chronic illness. Such adjustments often continue throughout the illness, as symptoms wax and wane. Difficulties in self-image can come from almost every aspect of the disease including cognitive changes, loss of mobility, fatigue, incontinence, changes in appearance (e.g., using a cane or wheelchair), or problems in sexual functioning, just to name a few. Often self-image problems require an examination of why lost abilities were important and identification of alternative methods of meeting those needs. For example, someone who likes to run marathons because it’s challenging and exciting may find the same needs can be met through different challenges, physical or otherwise, if he or she can no longer run well.
Stigma While self-image refers to how you think about yourself, stigma refers to how others view you. Unfortunately, in some environments it is common for people to stare, be patronizing or overly solicitous, or to be avoidant if you have MS symptoms that are visible to others. Discrimination in the workplace is not uncommon, although people with MS are protected by the Americans With Disabilities Act (ADA), which requires that your employer make reasonable accommodations to allow you to keep working. If your symptoms are not immediately visible to others, such as cognitive problems or fatigue, some people may say you’re just ignoring me or you’re just lazy, rather than attribute the symptoms to the disease. It is difficult for many people to adjust to the changes in how they are treated by others. However, it is also important to distinguish between true stigma, and difficulties one has in one’s own self-image which are projected onto others. For example, a person who grew up feeling uncomfortable around people in wheelchairs, and who now finds him/herself in a wheelchair, may imagine that others are uncomfortable even when they are not. In this way, people sometimes imagine there is stigma even when there is none. How people choose to deal with discrimination and stigma varies from situation to situation, and from person to person. Some people find that confronting discrimination directly and advocating socially and/or politically for the rights of people with chronic illnesses and disabilities helps them feel empowered. Other people find taking an educational approach to discriminatory situations is best for them, and still other people find that viewing discrimination as their problem/weakness/loss, not mine, and instead focusing on their own health, needs, and well-being is best.
Anger Anger is a common and natural reaction to the frustrations one encounters in living with MS. While having some anger about living with the frustrations, symptoms, and anxieties associated with having a chronic illness is appropriate and healthy, sometimes anger is expressed indirectly as sarcasm, cynicism, or irritability. Other people may feel consumed by anger. Either way, anger about the MSdirected toward others or bitterness can have damaging effects on a person’s relationships with others. An important task for many people with MS is recognizing the anger at the disease, learning to direct it properly at the disease rather than at loved ones, and managing anger effectively.
Isolation Many people with MS, as well as families and caregivers, can become socially isolated. Early in the disease, people may avoid talking to friends or family about their MS. Sometimes they avoid doing so because they fear others will treat them differently, or sometimes they avoid these discussions because they don’t want to burden others or make them worry. However, this avoidance can lead to increased withdrawal, resulting in isolation, loneliness, and depression, both for the person living with MS and his or her loved ones. People who are more severely affected physically by MS sometimes find it physically harder to have contact with others. Sometimes, people with MS (particularly those who don’t know anyone else with MS) feel that no one could understand what it is like living with this disease, so there is no point in trying to talk with others about it. However, there is a strong relationship between isolation, depression, and increased health problems. While maintaining relationships is not always easy, it is very important to one’s mental and physical health. Maintaining social contact often requires new methods of approaching relationships. Often it requires becoming more open with people about how the disease affects you and how it might impact your relationship. Support groups, volunteering, involvement in religious or spiritual practices and organizations, and taking classes at junior colleges are but a few ways people find meaningful contact with others. Many people have begun using Internet chat rooms. While the Internet can be helpful, we caution against spending so much time that it interferes with actual contact with other people. New research suggests that too much time on the Internet, at the expense of time face to face with other people, may increase depression and social isolation.
Dependence Issues around dependency can take a variety of forms, including emotional, physical, medical, and financial. Some people rush headlong into a dependent role, only to find themselves then feeling empty, hopeless, or useless. Others may fight their fears of dependency to the point where it is physically dangerous. For example, someone who is uncomfortable with dependence on walking aids may avoid using a cane or crutches, even though he or she is falling and getting injured. Often, people have uncomfortable feelings about starting new medications, and may reject treatments which can be beneficial. Recognizing one’s own issues around dependency is the first step towards preventing them from putting you at risk.
Abandonment Fear of abandonment can be one of the most frightening issues a person faces. Many people, particularly in the earlier stages of the illness, fear their spouse or partner will want to leave them. These fears are often so anxiety-provoking that couples avoid talking about this issue. For people with very severe disease late in the illness, people may fear being moved to nursing facilities to be abandoned. For those who are not married or in a relationship, there are often questions about whether they will ever find a life partner, or if they will lead a life abandoned by others. These thoughts can be so frightening that people avoid discussing them with anyone. Such fears are sometimes self-fulfilling, as people fearing abandonment may push others away through angry, withdrawing, or other behaviors. Avoiding this topic has never been known to save a relationship. Discussing these fears openly often results in feelings of relief for all concerned.
Uncertainty Because the course of MS is so unpredictable, many people experience considerable uncertainty and anxiety. This uncertainty often makes life planning difficult. Major milestones, such as changing jobs, taking on a mortgage, or having a child, all weighty decisions for anybody, can seem impossible to resolve when the uncertainty of MS is involved. Sometimes, people will spend so much of their time and resources preparing for things they fear in the future they miss out on pleasures, goals, and desires in the present.
Of course, there are also numerous other issues which can be experienced by people with MS, including feelings of hopelessness, anxiety, issues around work and disability, and many others. These issues can be overwhelming at times. However, they are not insurmountable. Very few people with MS have difficulties in all areas all the time. Most people experience periods of regular day-to-day life interspersed with periods when one or more of these issues become prominent. Most people will also find that they are able to cope with many of these issues much of the time; yet from time to time, one or more of these issues might becomes overwhelming.
Because each individual has different strengths, it is difficult to make general rules. However, our research suggests two general rules will apply to most people with MS.
Learn to Problem Solve Rather than focusing on overwhelming aspects of a problem, try to focus on what you can actually do about the problem. Many people find this difficult, in part because some problems seem so large and global. The first part of effective problem solving involves breaking down the problem into each separate component of the problem. Make a list of specific things that you are unhappy about. Next make a problem list of more specific, concrete problems. For example, instead of stating the problem as I am depressed, one might say I am depressed because I am lonely and because I can’t run anymore. Once loneliness has been identified, the person can make a plan to deal with the loneliness. The plan for loneliness might include calling a friend to make plans or getting involved in an activity with others such as a class or volunteer work. Some people may feel more comfortable connecting with others through a religious or spiritual group, spending more time with family, or getting a pet. Some people may want to change their positions at work to involve more contact with others or to join a singles group or club. Some people may feel less lonely just by committing to get out and spend other time around people in a coffee shop or library. Some people may feel less lonely by joining a group such as Toastmasters or acting as a teacher’s aid in a classroom or as a Big Brother or Big Sister for a child. The solutions to any problem will be as unique as the people who have the problem, but most problems can be helped by taking concrete steps toward a desired goal.
On the other hand, not being able to jog anymore may be something you cannot do anything about concretely- if you have foot drop, fatigue, spasticity, or weakness, you might just not be able to jog, no matter what. In this case, you may need to accept that you cannot exercise this way anymore, but to try to find alternative ways to meet the needs that you previously met by jogging. Ask yourself what you liked about jogging. Was it the sense of accomplishment? The physical exertion? Was it the pleasure of having time to yourself and a chance to clear your head? Once you have identified why the activity was important, you can begin to look for alternatives to meet those needs. For example, you might want to find a different exercise routine such as yoga, biking, swimming, or water areobics. If what you enjoyed about jogging wass having time to yourself, you might want to focus on engaging in other activities that give you time to yourself and a chance to clear your thoughts, such as meditating. The point here is that you may need to grieve or mourn the things you can no longer do, but that doesn’t mean you have to resign yourself to giving up all meaningful and rewarding activities. You may need to find two or three new activities, such as biking, water aerobics, and meditation, to meet the needs that were once met by just one activity, but you can and should ensure that your needs are getting met.
Avoidance is Harmful Usually people avoid a problem in an attempt to control uncomfortable feelings associated with it. While this might work in the short term, it makes things worse in the long run. Sometimes avoidance feels so natural, a person may not notice that they’re doing it. Common signs that you are avoiding something are making excuses or telling little white lies, or getting angry every time someone brings up an issue related to MS. For example, the person who is avoiding integrating MS into their lives may tell friends that a limp is due to a skiing accident. Very commonly, people in relationships don’t discuss their fears of abandonment or their fears for their future with their partner, thinking that mentioning it will put the idea in his or her head. People may also put off going to the doctor when new symptoms arise, or put off the use of adaptive devices, such as canes or crutches, although they are becoming dangerously unstable or extremely fatigued when walking independently. People may avoid taking breaks or naps, and then end up exhausted, rather than effectively managing their energy or fatigue. Some people may even choose to avoid or surrender their previous life goals they may decide that because of the MS, they can never start a family, or travel, or finish a college degree, when having MS doesn’t prevent most people from doing these things. Other people may avoid any planning for the future - they may allow health insurance to expire, over-commit themselves financially and refuse to consider that they might not always be able to work full-time, or refuse to consider purchasing long-term disability insurance or long-term care insurance while they have the opportunity. Some people may choose to ignore their doctor’s recommendations about medications or other treatments out of the hope that if I just ignore MS, it will go away. Other signs of avoidance may include anxiety, nightmares, or restless sleep. People who use avoidance also tend to experience more depression than people who approach and deal with uncomfortable feelings or situations.
Many patients feel that stress results in disease exacerbation, or that something very stressful brought on their first MS symptoms. This notion was first considered by Charcot, one of the earliest investigators of MS, who speculated that grief, vexation, and adverse changes in social circumstance were related to the onset of MS. While there is not a direct causal relationship between stress and MS, it is possible (but not proven) that some types of stress may increase the risk of experiencing a disease exacerbation or increased disease activity on MRI. In particular, it has been suggested that ongoing, moderate, interpersonal stressors, such as marital or job-related stress, may increase risk, but that sudden severe stressors, such as the death of a family member, do not. Positive stressors, like getting married or getting a promotion, do not appear to increase the risk of exacerbation. The relationship between stress and MS disease activity is not yet well understood, and many different things, such as coping style, personality style, the exact nature and duration of the stress, overall physical health, and other factors, probably play very important roles in this relationship. But, current research does suggest that managing stress well is likely to be an important part of managing MS well.
Most people feel uncomfortable asking for help from psychologists, social workers, or counselors. Some people believe only people with major psychiatricproblems see a psychologist, while others imagine psychologists will insist on endless and very expensive therapy examining their relationships to their mothers. While it is true that some psychologists see people with severe psychiatric disorders, and some specialize in long-term therapy that focuses on early life experiences, the health psychologists and neuropsychologists who work with people with MS usually use briefer, solution-focused techniques. Private medical insurance and Medicare/MediCal usually cover most or all of the costs of psychotherapy.
Counseling for chronic illnesses starts with the premise that most people who seek counseling are ordinary people under extraordinary circumstances. Problems are seen as stemming from the illness rather than from some underlying psychological deficit or personality weakness. Thus, the focus of counseling for chronic illness is on 1) identifying what difficulties are causing depression, anxiety, anger, or in some other way preventing the person from functioning optimally, 2) developing or increasing coping strategies which will improve the situation (e.g. problem-solving), and 3) decreasing the use of coping strategies which are damaging (e.g. avoidance).
Counseling can be brief. Some people like to agree on a specified number of sessions at the beginning of counseling. It is also often beneficial to develop a relationship with a psychologist or counselor to whom you can return in times of difficulty. This person will know you and can serve as a resource when you or your family have difficulties in the future. This familiarity will allow the psychologist or counselor to help you more quickly and effectively.
Individual Counseling In individual counseling, the person meets with a counselor, typically for 50 minutes, once per week. Often, the first week or two are spent with the counselor or psychologist getting to know a little bit about who you are, what your life is like, what the your specific problems and goals are, and what strategies you’ve tried to manage these problems before. Often, the psychologist will try to help you reframe the problem into a goal that is manageable and achievable. Different coping strategies will be developed, tried, and adjusted to maximize success.
Group Psychotherapy Group psychotherapy provides a place where people can talk about what they are experiencing as a person living with MS with other people who are going through similar issues. Similarly, there are groups for caretakers, couples, and families living with MS. Group therapy is different from support groups, which are usually run by non-professionals. Psychotherapy groups typically meet once a week for 60 - 90 minutes and have a psychologist or counselor present to help the group maintain focus. Support groups usually meet once a month for 90 to 120 minutes, and are run solely by other people with MS.
Medication In some instances, medications can be very helpful. Many people with chronic illnesses already take numerous medications and are reluctant to take yet another. But, if someone is struggling with the symptoms of depression or severe anxiety, he or she will not be able to mobilize their resources to manage the other symptoms of the disease effectively. Treating depression or severe anxiety is just as important as treating spasticity, bladder or bowel problems, fatigue, or any other MS symptom. Very often, emotional problems people experience result from the circumstance of having MS. A medication for depression or anxiety obviously cannot change that circumstance. However, depression can also be a direct symptom of the disease itself. The lifetime prevalence of depression in MS is about 50%, which is much higher than in other diseases that produce similar symptoms. This suggests that something about the action of MS itself may increase the risk for depression. New coping strategies, such as those you can learn in psychotherapy or counseling,can change the impact MS has on one’s life and reduce depression and anxiety. While medications cannot teach coping, they often can reduce the amount of distress a person experiences, which can allow the person to become more active in working towards improved coping and increased satisfaction with life.
Brief Treatment for Needle Phobia With the advent of interferon drugs in the management of MS, individuals, families, and caregivers have had to face the challenges associated with successfully administering injected medications. Some people find it difficult to learn to self-inject these medications because of anxious thoughts, fears, or other concerns related to the needle, the injection, blood, or all three. For some, these fears are present when the first prescription is written, while others find these fears emerging after several months or years of self-injecting. These fears can usually be treated in a few meetings with a psychologist.
Family members and significant others are also are impacted by MS. When someone you love develops a chronic illness, it is normal and healthy to worry about them and to want the best for them. With a disease like MS, which can be very unpredictable and which can lead to disability, these worries and hopes will often include fears about family finances and responsibilities. You may not be sure about the right things to say or do to help the person with MS. You may be angry about the disease, or get angry or frustrated with the person who has MS if he or she doesn’t take care of themselves as you think they should.
Many family members find themselves needing to assume a different role in the family finances or assume more responsibility for household chores and management, even if they do not need to actually physically care for the person who has MS. However, in some cases, some family members find themselves taking on the role of caregiver, or the person who takes care of the primary needs of the person with MS (such as meals, dressing, transportation, toileting, etc.). The tasks of caregiving can become a full-time job, but most caregivers find themselves providing care in addition to their home responsibilities or their own paying job.
Caregiver Burnout Caregiving can be both physically and emotionally demanding. It is common for the spouse or caregiver to experience burnout. Common signs of burnout are feeling depressed, hopeless, anxious, or irritable. Caregivers experiencing burnout may have impulses or fantasies about harming or abandoning the person with MS. Under extreme circumstances, the caregiver may find themselves acting on those impulses, sometimes subtly such as being unduly rough in a transfer or running a bath too hot. Burnout is a serious problem which does not get better with time. It only gets better through learning better ways to cope. Counseling services for families that are living with chronic illness can be helpful.
Caregiver Burden MS can affect relationships in a variety of other ways too. Increased dependency can result in the person with MS feeling more like a child than an adult and the spouse or significant other feeling more like a nurse than a partner. To compensate for the sense of helplessness, the person with MS might order others around, using others as extensions of the arms and legs, or insist that things be done the way I would do them, if I could. Irritation, guilt, feeling like a burden, anger, grief, and resentment are among many feelings that can add to an already stressed situation. Often, the caregiver feels anger and resentment over the new burdens, and experiences guilt because they are angry and resentful. This vicious cycle of difficult emotions can often result in the avoidance of communication between the caregiver and the person with MS.
Self-Care for the Caregiver It is essential that caregivers find ways to maintain a sense of independence in this important and demanding role. Very often, caregivers neglect their own needs, which can lead to physical illness as well as the difficult emotions described. Taking care of the caregiver may involve setting some personal time aside for visits with friends, reading a novel, or exercise. In order to do this, the caregiver needs to be able to ask for and accept help from other family members or organizations that provide care services.
Support Services The kind of support available to you will vary according to the resources in your community. This may consist of services such as delivered meals or someone to help with the personal care of your loved one. Other services include housework and grocery shopping. In some communities, grocery shopping can now be done online via the Internet. Community resources also offer educational classes or materials, group meetings providing emotional support, and respite for both the caregiver and care-receiver. Support groups can provide an opportunity for caregivers to share their strategies for dealing with difficult problems and emotions that you are now facing. From professionals, other caregivers, and some national organizations, you can learn more about the illness, how to manage stress, how to cope more effectively, how to build relationships, how to make your caregiving task easier, and how to plan for the future.
The earlier you obtain support and assistance, the better able you will be to cope over a long period of time and maintain your own well-being. Do not wait for a crisis to occur. If you are a family caregiver experiencing any of the signs of burnout or increased distress, it is better to seek help before problems become overwhelming.
Children generally know when something is wrong, whether you tell them or not. Like you, they feel better if they know what it is. Explanations in clear, simple language can help. Tell your children you have MS and describe the disease in language they can understand. Be as specific as possible about what their responsibilities and tasks are. When a parent becomesill, it is sometimes necessary for the children to take over some of the caretaking responsibilities or take over extra responsibilities or household work.
Nevertheless, it is important for children not to lose their childhood. Signs that a child may be at risk are having falling grades or performance in school, having few or no friends, becoming very reclusive, getting into trouble, or using drugs or alcohol. If a child shows any one of these symptoms, family counseling should be sought. The good news is that children of a parent with MS generally grow up just fine, even though they must sometimes take on more responsibilities than their peers. As in all families, if parents remain sensitive to the needs of their children, and communicate a safe, loving environment, their children will generally grow and develop in a healthy manner.