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4

Disease Management and Measurement

The impact, management, and research needed on specific symptoms of multiple sclerosis (MS) are discussed in the previous chapter. This chapter discusses the conditions of life with MS from a more general perspective and emphasizes research that can improve the lives of people with MS. It covers psychosocial and physical adaptations, as well as a variety of health care issues. At the moment of being diagnosed, the patient is forever transformed into a “person living with MS.” Even in the absence of signs or symptoms this person will forever after live with the knowledge that he or she can be unpredictably impaired. Sometimes the person will recover, sometimes not. For most, living with MS will become one of the major challenges of life. People with MS need to solve problems ranging from finding the right button hook, to getting dressed each morning with limited use of their hands, to specifying “reasonable accommodations” for continuing to work.

Improving the lives of people with MS rests on better understanding of their needs and their successes, specifically research into the conditions of life with MS, which requires objective, reliable research tools. The most essential tools for measuring the conditions of life with MS are the various survey instruments that measure abilities to function and quality of life, which are discussed in the latter half of this chapter. These tools not only provide for objective assessment of the needs of people with MS, they are also an essential element of measuring the effectiveness of any sort of therapeutic intervention—be it a rehabilitation process, a self-help program, or a disease-modifying therapy. Quality-of-life measures can also reveal aspects of the disease process that are not readily captured in standard clinical measures and might reveal insights into the underlying disease



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Page 177 4 Disease Management and Measurement The impact, management, and research needed on specific symptoms of multiple sclerosis (MS) are discussed in the previous chapter. This chapter discusses the conditions of life with MS from a more general perspective and emphasizes research that can improve the lives of people with MS. It covers psychosocial and physical adaptations, as well as a variety of health care issues. At the moment of being diagnosed, the patient is forever transformed into a “person living with MS.” Even in the absence of signs or symptoms this person will forever after live with the knowledge that he or she can be unpredictably impaired. Sometimes the person will recover, sometimes not. For most, living with MS will become one of the major challenges of life. People with MS need to solve problems ranging from finding the right button hook, to getting dressed each morning with limited use of their hands, to specifying “reasonable accommodations” for continuing to work. Improving the lives of people with MS rests on better understanding of their needs and their successes, specifically research into the conditions of life with MS, which requires objective, reliable research tools. The most essential tools for measuring the conditions of life with MS are the various survey instruments that measure abilities to function and quality of life, which are discussed in the latter half of this chapter. These tools not only provide for objective assessment of the needs of people with MS, they are also an essential element of measuring the effectiveness of any sort of therapeutic intervention—be it a rehabilitation process, a self-help program, or a disease-modifying therapy. Quality-of-life measures can also reveal aspects of the disease process that are not readily captured in standard clinical measures and might reveal insights into the underlying disease

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Page 178mechanisms. For example, pain, fatigue, and memory impairment are often among the earliest manifestations of the disease, yet they were virtually unrecognized as symptoms for many years. These symptoms are prevalent, troubling, and yet correlate only weakly, if at all, with neuropathology as revealed by current neuroimaging techniques. Quality-of-life measures might also provide more sensitive outcome measures of clinical efficacy of new therapies, and importantly, they measure the outcomes that concern patients the most. Given the millions of people who will be living with MS now and in the future, it is important that the focus on curing MS not come at the expense of efforts to address the disruptions that pervade routine daily activities, personal relationships, family life, work responsibilities, and social involvement.214 LIVING WITH MS If a cure were found, would I take it? In a minute. I may be a cripple, but I'm only occasionally a loony and never a saint. Anyway, in my brand of theology, God doesn't give bonus points for a limp. I'd take a cure; I just don't need one. A friend who also has MS startled me once by asking, “Do you ever say to yourself, ‘Why me, Lord?' ” “No, Michael, I don't,” I told him, because whenever I try, the only response I can think of is, “Why not?” Nancy Mairs124 Many people with MS cope remarkably well, others less so. Understanding the traits and conditions that enable people to cope so well can provide insights necessary to help others, but obtaining these insights is complex. Conducting an investigation about people with MS similar in depth and scope to the multisite Medical Outcomes Study, a series of multisite studies funded by the Robert Wood Johnson Foundation in the early 1990s,175 would be invaluable, but also methodologically and logistically challenging and enormously expensive. A growing body of research describes the lives of average people living in the community with MS. Many of these studies involve surveys, the application of various psychometric instruments (functional status measures, quality-of-life indices, and other instruments targeting specific topics), and qualitative methods (reviews of in-depth interviews or focus groups). With the exception of the Expanded Disability Status Scale (EDSS; see Appendix D), there is little consistency in the survey forms or instruments used across studies. In addition, despite the experiential insight gained from well-conducted qualitative studies,41 they rely on very small samples from specific subpopulations, and the results cannot be assumed to apply to the full range of people with MS. Some studies have involved large numbers, but they tend to focus on single, well-defined issues (for example, employment). Perhaps most importantly, most studies treat people with MS as a homogenous group, as opposed to groups of people with markedly different disease states.51

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Page 179 “You Have MS” Numerous studies have conclusively documented that communication between health professionals and patients is often problematic.106,107 For people with lifelong conditions such as MS, initial contacts with health care professionals are especially important and can shape patients' attitudes about their disease and expectations about the role of clinicians. Sometimes problems result from general insensitivity, probably not specific to MS per se. People with MS who write about their experiences invariably highlight the moment when they were first given their diagnosis. It is a pivotal, life-altering moment that remains vividly etched in their memories. Very often, these memories are filled with anger at the way the diagnosis was delivered. Sally Ann Jones, in her mid-fifties with MS, described how her doctor told her the diagnosis many years previously:84 The doctor spent about a minute and a half with me and then he said, “The bad news is, Mrs. Jones, you have MS. The good news is, when I saw you before, I wrote down three potential diagnoses in my notes. If you'd had either of the other two diagnoses, you would be dead by now.” Back then, he never mentioned that to me. I said, “Why didn't you tell me?” He said, “The symptoms of the other diagnoses would have been so bad, you would've had to return, and I didn't want to upset you unnecessarily.” And with that, he left. He didn't tell me what to do. He didn't say, “Do X.” He didn't say, “Come back in six weeks.” He just left. Period. He spent about 10 minutes, beginning to end. I was absolutely in shock. Because the symptoms are so often insidious, vague, and nonspecific, there can be a long period during which the patient knows something is seriously wrong but is unable to receive definitive answers. The uncertainty is highly stressful, and patients later often resent the long period of concerned waiting or the attitude of a physician who felt it was kinder to offer vague explanations when she or he was strongly suspicious the problem was MS.130 In 1995, Murray wrote, “I have never heard a patient express gratitude for being kept ignorant of his or her diagnosis, but I have heard many express anger and disappointment for being kept in the dark.... While patients are in the dark about their diagnosis, they are unwell without legitimacy, expected to function normally without the physician-sanctioned ‘sick role,' and often under the suspicion of family, friends, employers, and even themselves, of being hypochondriac or malingerers.”139 One study identified four major themes of the experience of being diagnosed with MS: whispered beginnings (earliest signs and symptoms, understood only in retrospect); echoes of silence (worrying, wondering, and waiting, reinforced by relapsing and remitting patterns); hearing the words spoken and beginning to tell others; and refocusing their lives.100 During the period of whispered beginnings, people often tried to minimize what they were experiencing, attributing it to stress. During the echoes-of-silence period, patients frequently felt anxious,

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Page 180lonely, and worried, sometimes trying various remedies (for example, multivitamins, stopping smoking, drinking lots of water, exercising). Finally, the actual moment of being told, “You have MS,” was readily recalled by the participants. They described trauma-filled reactions such as “being in shock, feeling numb, and really stunned” when they heard the news. For some, the crisis of this response lasted for moments; for others, it lasted days to weeks. The experience of being told the diagnosis of MS brought the study participants to a time of being “emotionally wounded.”100 These experiences emphasize not only the value of better diagnostic tools discussed in Chapter 2, but also the need for a better understanding of communicating with patients in the face of uncertainty at the initial stages of diagnosis and—once the diagnosis is confirmed—in the face of delivering devastating information. Yet the issues surrounding diagnosis are changing. Patients today spend less time waiting for a diagnosis than they used to, largely due to improved magnetic resonance imaging (MRI) technology and its earlier, more frequent use. Once they receive their MRI results, however, they are faced with uncertainties and decisions that previous patients were not. One is the problem of interpreting abnormal MRI scans. Although the scans might confirm a diagnosis of MS, they still provide little information about the prognosis for impairment or disability. Another is the decision whether to start any of the disease-modifying therapies. Patients must weigh the immediate disadvantages of being yoked to a regular medication schedule with possible side effects that diminish their quality-of-life against the potentially great, but nonetheless uncertain, future benefit. In essence, it is impossible for a patient to make a fully informed decision. Patients can only guess, but the burden of decision rests with them. Therapies appear to be most effective if they are begun early in the disease—at a time when many patients might be most reluctant to assume the burden of treatment. Disease-modifying therapies for MS were first approved in 1993 but have been widely used only in the last few years. In sum, much of the literature on the psychological aspects of living with MS, almost all of which predates the wide use of disease-modifying therapies, must be reconsidered in light of current options, which are themselves in flux. This does not, however, alter the fact that people with MS must adapt and readapt throughout their lives to MS. Psychosocial Adaptation MS generally starts just as people are beginning their independent lives, families, and careers. Many will live with the disease across the full spectrum of their adult lives. Repeatedly over time, they adjust, with varying success, to its myriad disabling consequences. MS is a disease that teases with its unpredictably waxing and waning course—debilitating people one month, restoring function the next. Sometimes losses are insidious, gradually mounting and only dimly

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Page 181perceived until people finally recognize their presence and permanence. For some, living with MS can be like balancing, precariously, on a razor's edge. Others do well, experiencing only fleeting symptoms over many years. S. Kay Toombs, a philosophy professor who has had MS with progressive impairment over 25 years, observed:214 When the body refuses my commands, it suddenly appears to have a will of its own. Rather than being that which enables me to carry out my projects in the world, my body is an obstacle that I must overcome. I may, for example, have to manually pick up my leg if I am to negotiate a small step, or pay exquisite attention to the way my body feels in terms of pain, fatigue, stiffness, if I am to engage in ordinary activities. Bodily attentiveness becomes an integral aspect of the illness experience. With permanent physical impairment, one must daily compensate for the body's disabilities and explicitly allow for its limitations. Even when there are lengthy periods of remission, the chronically ill remain uneasily attuned to the way the body feels and moves—always “on guard” for signs of an impending recurrence. Research suggests that the experiences and feelings of people with MS are often more positive than clinicians or others expect. One study administered six instruments (Areas of Daily Functioning Questionnaire; Ways of Coping Checklist; Global Coping Scale; Thoughts About Suicide Probe; Anger-Fear-Depression Questionnaire; and Global Self-Esteem Scale) to 125 people with MS.48 Although almost 60 percent reported having felt they needed professional psychological help at some point since their MS diagnosis and about 30 percent reported that they were not coping well and currently needed professional help, the most striking finding was that, despite the obvious challenges faced by people with MS, most successfully adapt to the disease. This finding was replicated across all the measures included in the study, including self-rated quality of marital, family, and friend relationships; objective measures of emotional functioning, thoughts of suicide, and self-esteem; and direct self-assessments of current coping with the disease.48 Another study involving 629 women with MS found that compared to normative controls, they displayed significantly better interpersonal relationships and stress management, although they had significantly lower physical activity and spiritual growth compared to normative controls.199 A study of 64 MS patients in Finland found that although they reported feeling physically limited and insecure, many also noted that having the disease helped clarify personal values and enhanced personal growth.115 People vary widely in their coping styles and in their perceptions of how much control they have over what happens to them.160 Coping is defined by Lazarus and Folkman as “constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person.”114 Styles of coping with stress are often

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Page 182dichotomized as “problem focused” or “emotion focused.” Problem-focused behaviors entail confronting the problem, seeking information about how to manage it, and devising strategies to deal with it. Emotion-focused strategies generally involve denial and escape or avoidance, or reconfiguring the problem to make it more positive. While most people use both strategies, one style usually predominates. Studies in other diseases suggest that patients who use problem-focused techniques make better adjustments and have better outcomes than those who use avoidance and denial.11,37,99,172,173,203,204 Remarkably few investigators have inquired into the mechanisms that underlie success and failure in adapting to MS.2 One prospective study that followed the adaptations and coping strategies of 27 patients found that escape avoidance coping strategies predicted future depression, but this was not a robust finding because the investigators reported that the correlation was not apparent in a follow-up study of the same patients.2 Another study of 433 people with MS did not find a significant association between coping strategies and emotional well-being.231 The same study noted that study subjects' coping styles depended on their level of uncertainty about their symptoms, treatment, relationships with caregivers, or future plans. Subjects used more emotion-focused coping when they were more uncertain and problem-focused coping when they were less so. Psychological adjustment to MS is complex and multiply determined. Eklund and MacDonald48 found that people with MS reporting better long-term adjustment tended to use “adaptive denial” as their coping mechanism at the time of diagnosis. By comparison, those reporting “confrontational coping” (obsession) and escape or avoidance (complete denial) adjusted relatively poorly. In addition, those who had thought through answers to the question, Why me?, were less likely to be depressed in the future. A study of 43 people who had MS for four years or longer (15 years on average) found no relationship between the extent of physical impairment and coping style.12 Murray139 suggests that MS patients use both problem- and emotion-focused coping styles, but the three most common strategies are problem focused: trying to maintain some sense of control; trying different problem-solving approaches; and looking objectively at problems from different angles. Coping strategies can change over time, with emotion-focused methods predominating when patients sense things are beyond their control.139 One limitation of most studies on coping is that most study participants are identified well after the onset of MS so any consequences of adaptational style would have been in operation for a number of years.42 The chronic and uncertain nature of MS makes tremendous demands on the coping skills of people with MS and those who care for them. People adjust with varying degrees of success, relying on different coping strategies, often switching from one to another as their circumstances change. A better understanding of which of those strategies (and under which circumstances) foster more successful adaptations to life with MS would enable nurses, social workers, psychologists, physical therapists—indeed, anyone who counsels people affected by MS—to

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Page 183provide greater assistance in helping people manage their disease. Likewise, people with MS would directly benefit from information about what coping strategies will most enhance their personal sense of well-being. Change in Attitudes over Time Finally, given the chronic nature of MS, patients' attitudes toward the disease—and even themselves—can vary widely and change over time. Toombs wrote: Bodily change may have different meanings for the same individual at different points in time. The inability to walk has a different significance for me now than it did when I first contemplated this loss of possibility as a thirty-year-old woman who was used to “standing on my own two feet.” And the meaning of this change is different for me than it is for my friend who was a marathon runner before being diagnosed with MS.214 People of all ages with MS experience emotional distress and diminished sense of well-being when illness disrupts their life-styles, activities, and interests. However, older people with MS appear to be less adversely affected than their younger counterparts.43 It is not known why this is so, but it could result from age differences in psychological disengagement, expectations about the age appropriateness of chronic disabling illness, or some other psychological processes. Little research has examined changes in people's attitudes over time or the factors associated with such shifts. These changes could alter perceptions of the value of medical therapy, the role of health care professionals, and interventions to address functional impairments. Duration of disease does not appear to be associated with psychosocial adjustment: “longer duration is not manifested in greater psychological distress, worry, body image, depression, or guilt.”51,110 One interpretation is that the longer people have MS, the better they are at accepting the physical consequences and the less likely it becomes that MS will affect their emotional well-being. Impact of Self-Perceptions and Attitudes Patients, regardless of their illness, also vary in their perceptions of how much control they have over their lives. People with a strong internal “locus of control” strive to exert influence over what happens to them. They believe they are responsible for what happens to them by their own efforts to control the situation. In contrast, those with an external “locus of control” tend to hold outside institutions, other people, or “fate” responsible for what happens to them. A study of 94 people with MS found that increasing sense of personal control was associated with better psychosocial well-being, and two-thirds of participants reported positive psychosocial adjustment.42 An investigation involving 100

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Page 184people with MS found that those with an internal locus of control were still largely ambulatory and self-sufficient after 25 years compared to externally focused patients.226 These studies could not directly investigate the reason for those differences. Self-perceptions and attitudes about their lives have important consequences. Toombs notes, “Negative societal attitudes towards illness and disability not only diminish self-esteem, making it hard to accommodate loss of bodily function, but such attitudes cause concrete hardships in terms of the disruption of personal relationships, loss of employment opportunities, inability to obtain health insurance, and so forth.”214 These self-perceptions might vary according to the cause of disability. In a study of 25 wheelchair users, Avillion8 found much lower self-esteem among people disabled by MS than by spinal cord injury. Eklund and MacDonald,48 however, found that self-esteem reported by their 125 respondents with MS did not differ significantly from that observed in samples of physically healthy people. Other studies also offer contradictory findings about self-esteem of people with MS.139 Stress Living with MS is indisputably stressful, but it does not follow from this that stress triggers exacerbations or hastens disease progression. This issue has been debated for more than a century with strong held views on both sides.139,202 For many people, the link seems obvious. Psychological stress is known to alter immune response, but it should also be kept in mind that these changes are generally small and within normal ranges.77 In June 1999, the American Academy of Neurology (AAN), through its Therapeutics and Technology Assessment Subcommittee, conducted a comprehensive review of studies on the impact of psychological stress on MS done up to that date.66 The AAN committee concluded that research done up to the time of its review had not clearly established that psychological stress can trigger MS onset or exacerbation, but that this is possible. Most published studies attempting to demonstrate a causal link were methodologically flawed (reviewed in 1999 by Schwartz et al.176). Since the AAN review, a well-designed prospective study has been published indicating that patients who experience one or more stressful events have a small-to-moderate increased risk of disease progression.176 However, the risk of stress following physical deterioration is even greater. In other words, patients with a faster rate of deterioration will also have a higher risk of stressful life events and, consequently, will be more likely to experience stress before an exacerbation. The link between stress and disease progression remains frustratingly unclear. Many patients believe that stress will worsen their disease and blame themselves for exacerbations (or feel that others blame them) when they have not managed to eradicate stress from their lives. People with MS are frequently cautioned to “take it easy” and not “overdo it,” sometimes leading to decreases in

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Page 185recreational and physical activity that are out of proportion to this level of impairment.200 This inactivity can contribute to worsening functional capabilities, reducing endurance, and disturbing sleep patterns, perhaps also heightening stress. Indeed, Schwartz and her colleagues have suggested that limiting one's activities might actually leave people more vulnerable to stress.176 The effect of this “vicious circle” on quality-of-life and disease progression has received little study. Even independently of a causal link between stress and disease progression, stress management would seem to be an obvious area in which interventions could improve quality-of-life for people with MS, as well as their caregivers. Family and Social Relationships As for most people, relationships with family and friends are central to the lives of people with MS. Despite common assumptions, neurological impairment and physical handicap are not the major determining factors of quality of life for MS patients. Patients are affected primarily by their relationships to other people and secondarily by symptoms of fatigue, pain, and cognitive dysfunction.139 Quality-of-life studies in MS patients suggest that there are seven primary factors affecting mental health and quality of life: loneliness-companionship, fatigue, degree of chronic pain, duration of symptoms, stressful life events, self-perceived cognitive deficits, and clinically assessed cognitive deficits. Evidence about the effect of MS on relationships is somewhat contradictory. Conventional wisdom holds that the stresses of MS end marriages, especially those that are already tenuous, and that divorce rates are double those in the general population.139 For marital relationships, three factors are particularly important: (1) both partners cannot equally “share” the illness experience, despite good intentions; (2) traditional gender roles may be compromised; and (3) having one's partner serve as caretaker raises a complex set of emotions on both sides.115 In one study of 125 people with MS, slightly more than half reported that relationships with their spouses and other family members had changed as a result of the diagnosis (55 and 53 percent, respectively), and somewhat less so with close friends (39 percent).48 However, respondents said that these changes were positive about half of the time. A study involving 629 women with MS found significantly better interpersonal relationships than for normative controls.199 A study by Wassem226 of 100 people with MS found that their divorce rate was less than one-third that of the general population. Several explanations are possible. Patients reported that the problems caused by having MS had brought them closer to their spouses and that they had more time to spend together than when both worked. Women reported less strain in their roles as mother and spouse when MS forced them to stay home rather than work full-time.226 A study of 101 people with MS found they generally had small social networks of about four family members and two friends. Despite this, they perceived “moderate” to “quite a bit”

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Page 186of love, respect, or admiration from these people. Isolation grew with duration of disease.145 Effect of Spousal Attitudes. At the time of writing this report, only one recent publication has reported on the role of spousal attitudes in the psychosocial and physical functioning of the person with MS. Schwartz and Kraft178 examined 44 people with MS and found, not surprisingly, that patients who saw their spouses as responding negatively to their impairment had poorer general mental health functioning and more symptoms of depression. In contrast, patients who viewed their spouses as encouraging of well behaviors were significantly less depressed. The authors of this study suggested that their findings be used to develop family-based treatment strategies but did not test any interventions. It should also be noted that cross-sectional studies such as this cannot establish causality, for instance, whether the spousal attitudes were a cause or a consequence of the mental health of their partners with MS. Caregiving. When a partner, family member, or friend becomes the primary caregiver, complex issues arise.139 While the person with MS is the one who needs the most help, the caregiver is inevitably affected, but the needs of the caregiver are often neglected by the health care system. Little information is available about the needs and preferences of caregivers who often must adapt to more restricted roles and heightened limitations on time, privacy, social activities, employment, and finances.139 One study that examined the experiences of nine caregiver wives of husbands with MS described how love and commitment for their husbands often coexist with anger toward the disease.40 As one woman said, “I still love [husband's name] in spite of everything. And it's really hard to love someone so much and watch him deteriorate. I love him anyway....I don't hate him, I hate the disease.” Yet the demands of caregiving easily become overwhelming.40 The wives sometimes admitted they had reached a breaking point. One observed, “There were times when I felt like throwing in the towel.” The women sometimes felt the inequity of their marital relationships and the pressing need for “space.” One woman said, “I just felt like...if I couldn't get away from the situation for just a little bit....I felt like I was about to go stand on a corner and scream. It's not because I don't love him, or not because I resent what I am doing, it's just that I need some space.” Another study of 146 people with MS and their caregiving spouses or partners revealed significant differences in coping styles, depending on the caregiver's gender and health, and the level of dependency of their partner with MS.72 More knowledge about the coping strategies and needs of caregivers can be used to provide information and counseling to help families cope more effectively with the demands of MS. There has been little research in this area or on ways to relieve caregiver burden. Yet relieving caregiver burden might, in fact,

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Page 187offer a strategy to reduce overall health care costs by supporting various interventions that might delay the time when an MS patient needs full-time institutional care or even forgo this need altogether. This might be achievable by relieving the burden of caregivers in a variety of ways such as by providing respite care as temporary relief for caregivers, household help, by providing counseling and social support to the caregivers, or by providing in-home health care visits. Identifying cost-effective measures to relieve caregiver burden would be of mutual benefit to caregivers, MS patients, and health care providers. Relationships with Children. Parents with MS are especially concerned about the effect of their illness on their young children. Some research has described children of parents with chronic illnesses as constrained, repressed, and antisocial, whereas other studies have noted they are more empathetic and mature in their friendships. More research is needed about the children of parents with MS.115 Crist35 videotaped interactions between 31 mothers with MS and their 8- to 12-year old daughters and compared them to those of 34 mothers without disabilities and their daughters. She found similar rates of receptive, directive, and dissuasive behaviors for mothers with MS and their daughters compared to the control group pairs. Another study examined 35 mothers with MS and their young children, paying particular attention to the effects of exacerbations of the disease.38 When the mothers' symptoms were stable, both mothers and children described similar levels of physical affection. During exacerbations, however, their perceptions diverged. Mothers underestimated the impact of the exacerbations compared to the child's perception. One mother noted: Well, there's a lot of times, because my patience [is] short and...I'm more concentrating on myself, I'm self-centered at that time and they come in...my youngest daughter is very affectionate...when I am having an exacerbation and she wants to hug and she wants to kiss, I try to respond to her because I know she needs this. This is important to her and it's part of her make-up. There's times when I have to say to her, “Mommy's really not feeling well.”38 Sometimes fathers or other family members take over family responsibilities from the mother, leaving mothers saddened and feeling less involved with their children than they would like.38 Older children often overcome fears with knowledge of their own competence and increasing independence. As one older child said, “She deals with it pretty well and knows her limits. It doesn't really bother me because I don't rely on her for every need. She just needs to take care of herself and I will be fine.”38 Another child described her mother's frustration during exacerbations: “She complains all of the time and we have to get this and get that for her. Then she cries and gets mad because she can't do it. It's really hard to take when you just want a normal life like everybody else.” Little research has examined strategies for working with parents who have MS and their children to handle fears and expectations.

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