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A booklet about Multiple for family members Sclerosis PLAINTALK" A Booklet About Multiple Sclerosis For Family Members by Sarah L. Minden, MD Debra Frankel, MSc, OTR Cover design by Alfred Wong (416) 424-2680 Multiple Sclerosis Society of Canada 250 Bloor Street East, Suite 1000 Toronto, Ontario M4W 3P9 r ........ _ .... u INTRODUCTION Multiple sclerosis affects not only the person with the illness, but also family members and friends. In this pamphlet we explore some of the problems families face and describe ways in which others have handled them. Many chapters of the Multiple Sclerosis Society of Canada offer support groups where family members can share their concerns and find encouragement. We have designed this pamphlet to be evocative of a meeting of one of these groups. In it, you will find husbands and wives, children and parents of people with MS, speaking frankly about the strains and challenges -- and opportunities -- of living with someone with MS. NOTE: The questions and comments which follow are typical of those voiced by families about MS. Just as the experience of MS itself varies from person to person, so too do the concerns of families in which there is MS. The responses provided are based upon professional advice, published material, and expert opinion, and do not constitute therapeutic recommendations. The Multiple Sclerosis Society of Canada recommends that families discuss their own particular questions or concerns about MS with their personal physicians or other qualified professionals. WHAT IS MS ? MS is a disease of the brain and spinal cord (central nervous system), usually diagnosed between the ages of 20 and 40, in which the covering of the nerves (myelin sheath) is destroyed (demyelination). Like insulation on electrical wires, myelin insures rapid transmission of nerve impulses from the brain to move a body part and from the body to the brain to interpret sensations. When myelin is destroyed the messages are not transmitted effectively so movement is slow or uncoordinated and sensation is altered. While at first there may be healing and return to normal function, later a scar (called a plaque) is formed which permanently interferes with nerve transmission and motor or sensory function. Damage to the myelin can occur at any time and affect any part of the brain or spinal cord. Because there are multiple areas of scarring (sclerosis) the disease is called multiple sclerosis. Each person with MS will have a unique set of symptoms depending on where in the central nervous system the demyelination occurs: weakness, numbness, incoordination, loss of balance, visual problems, loss of bladder or bowel control, difficulty speaking, or dizziness. Fatigue is also a very common symptom. MS is neither fatal nor contagious. Some very few people who become bedridden with MS may have a shortened life expectancy because they develop a serious infection. DIAGNOSIS The diagnosis of MS is very difficult. There are no laboratory tests that prove that someone does or does not have MS. Some tests like computerized axial tomography (CAT) scans, mag- ..... -,_ ............. _,_, netic resonance imaging (MRI) scans, evoked potentials, and analysis of cerebrospinal fluid may suggest the diagnosis, but none is foolproof. A neurologist or other physician will likely make the diagnosis when there are definite signs of involvement of multiple parts of the central nervous system. This will usually mean that there has been more than one episode of neurologic impairment and more than one kind of symptom, e.g. weakness in one arm AND the other leg, weakness AND numbness, weakness AND bladder problems. Because some people may have only a single episode, most physicians are unwilling to make the diagnosis of MS until there is good evidence for multiple lesions. While this may lead to long periods of uncertainty for both patient and physician about what the symptoms mean, most people will agree that it is best to be sure of the diagnosis before making it. WHAT HAPPENS TO PEOPLE WITH MS? The course and outcome of the illness depend on how often there are episodes of demyelination and how much of the brain and spinal cord are involved in the disease process. About 70% of people have what is called relapsing-remitting MS in which exacerbations (new symptoms or worsening of old symptoms) are followed by periods of complete or partial recovery (remission) while about 30% have symptoms which continue to worsen without a remission (chronic progressive MS). Many people think the worst, that everyone with MS ends up paralyzed in a wheelchair. In fact, only about onethird of people become severely disabled, while one-third have a mild course with very few restrictions and one-third become only moderately restricted, needing a cane or crutches to move about. WHAT CA USES MS ? We don't yet know what causes MS. However, destruction of myelin seems to be due to an abnormal response of the immune system in which cells that normally protect against illness react against the body's own tissues (autoimmune response). A virus or other agent to which an individual is exposed in childhood might be the trigger for MS later in life. MS is not a genetically transmitted or inherited disease. There appears to be, however, a slight genetic susceptibility to the disease, as evidenced by a small increased risk of MS in close relatives. ARE THERE ANY TREATMENTS FOR MS? Many people receive medication (e.g. prednisone or ACTH) for acute exacerbations. There are also medications that can give some relief for specific symptoms such as muscle spasms or incontinence. Active research has lead to the approval of beta interferon, which has been shown in clinical trials to slow the progression of the disease for some people. Investigation into other possible treatments is continuing at a steady pace. In addition, general measures such as a nutritious diet, appropriate exercise, and adequate rest are important. ....... _ .................... ................................................. EARLY DAYS AND DIAGNOSIS MS IS SO HARD TO DIAGNOSE.t MY WIFE HAD STRANGE SYMPTOMS THAT NONE OF THE MANY DOCTORS WE SAW COULD EXPLAIN. THE MORE SYMPTOMS SHE HAD THE MORE SHE THOUGHT SHE WAS "GOING CRAZY" When MS begins dramatically, with loss of vision (optic neuritis) or paralysis, it is clear something is seriously wrong. Often, however, early symptoms are mild and transient. Necrologic examination and laboratory tests may be normal. The diagnosis may not be made for many months or years. This discrepancy between a person's experience and what others see is confusing: people may think the symptoms are exaggerated or that the patient is anxious or depressed. WHEN WE FINALLY LEARNED THE DIAGNOSIS WE FELT GUILTY BECA USE WE HAD BEEN SO FED UP WITH DAD'S COMPLAINTS. Guilt is a common feeling among family members; many people regret how frustrated or angry they were before the diagnosis was made. It is a natural mistake to misinterpret someone's complaints as psychological if you cannot see anything wrong with him. Family members should not be so hard on themselves: how could they have known what was wrong when specialists found it difficult to figure it out? OUR INITIAL REACTION TO HEARING DIAGNOSIS WAS ANGER. Many people feel intensely 6 OUR SON'S angry when they learn the diagno- sis. It seems, and is, unfair. Sometimes the anger is directed against the doctor who made the diagnosis, or against others in the family. Family members may find themselves quarrelsome, irritable, and full of blame. It takes time for them to realize that it is the disease they are angry at, not each other, and to recognize there is a common problem to tackle. I FELT NOTHING A T ALL. i WAS NUMB, IN SHOCK. Some people protect themselves from emotional pain by feeling nothing. Denial of feeling is a normal reaction to intense emotion that seems too much to handle. It is common during the first weeks and months after the diagnosis is made. Over time, people begin to face the realities of the situation. Denial presents a problem when it interferes with obtaining appropriate medical care or making necessary life adjustments. Denial affects both the person with MS and family members. Each one moves beyond it at his or her own pace. LIVING WITH MS MY HUSBAND DENIES HIS DISABILITY BY REFUSING TO USE A CANE EVEN THOUGH HE FALLS FREQUENTLY. THIS IS VERY FR USTRA TING FOR US. While some people with MS or their families may say that they know the MS exists, they may act as if they don't believe it. Going from one physician to another hoping to find out it isn't so, or trying costly, unproven treatments are forms of denial. Refusing to believe that something is true is different from 7 hope. Hope involves accepting outlook and making reasonable unfortunate situation. WHAT WE FIND HARDEST UNPREDICTABILITY reality with an optimistic efforts toward ameliorating an TO DEAL WITH IS THE People with MS never know from day to day, or even from hour to hour, whether they will feel well or fatigued or weak. It is typical for MS symptoms to fluctuate: Will the person with MS be able to join in the family's activities? Will special help be needed? Will some hoped-for event have to be cancelled? This unpredictability is frustrating. It can lead to misunderstanding and conflict: Is the person really so unwell? Should he or she be pressed or left alone? It makes it hard to plan for the future: Should the family buy that new house, or will there be too many stairs? Will there still be two incomes with which to meet the mortgage payments? Should the home be remodeled now for a wheelchair? Should the person with MS stop working? Uncertainty may be easier to live with if it is expected and planned for. There may be less disappointment when plans fall through if an alternative plan has been arranged, "just in case." I GET VERYANGRYAT HOW THINGS HAVE CHANGED, BUT I FEEL GUILTY ABOUT MY FEELINGS. Anger and guilt are two of the most common feelings that concern families in which there is MS. It is natural to feel angry about the changes that occur with MS and the demands the illness places on a family: a drop in income, new responsibilities, changes in traditional roles. These are real practical and emotional burdens that everyone has a right to be angry about. MY WIFE IS SO SELF-CENTRED AND ANGRY THESE DAYS THAT IT'S VERY HARD TO LIVE WITH HER. Some people with MS become so focused on just getting through each day that they pay less attention to other people. Their own feelings, thoughts, and body functions become the objects of their emotional investment rather than their family members. They may become angry and critical of those caring for them and believe that the situation would improve with a different doctor, a better therapist, a more supportive family. When family members work hard to be sensitive and helpful to the person with MS, this angry criticism or lack of interest understandably provokes disappointment, hurt, and anger in return. Understanding that the feelings of the person with MS are not uncommon and usually pass with growing adjustment to the disease can help families take complaints and disinterest less personally and feel more tolerant. It may also help to let the person with MS know how the family member is feeling. MOST OF THE TIME I DON'T MIND HELPING AT HOME BUT SOMETIMES 1 CAN'T STAND 1T. ONE DA Y I LOST MY TEMPER AND TOLD MY MOM THAT I REALLY HATED HA VING TO DO SO MUCH EXTRA WORK. THEN 1 FELT BADLY THAT 1 YELLED AT HER. Tension builds when family members fear that the expression of strong emotion will exacerbate the MS. Holding back feelings, however, may lead to angry outbursts, avoiding the person with MS or blaming him for everyone's distress. In the end, such tension, anger, and loneliness are far more painful than the natural airing of feelings would have been. Talking frankly helps family members understand the strain that each one feels and recognizes each other's needs. AT SOME POINT I STOPPED BEING ANGRY ALL THE TIME AND BECAME VERY SAD Anger may hide feelings of sadness. The many losses from MS lead to feelings of grief: waves of painful emotion, tears that seem to come from nowhere and don't stop. There may be trouble sleeping and disinterest in food or activity. Some people don't want to be alone, others seek solitude. These feelings may arise when the diagnosis is made, in anticipation of what will come, or may be delayed for many years, until disability has begun to interfere with daily life. When the grieving process is allowed to follow its natural course, there usually comes a time when the limitations of the illness are accepted and energy is renewed for achieving as much satisfaction in life as possible. When grief is stifled, the sufferer remains stuck in anger and bitterness, unable to move forward to a more comfortable and adaptive position. WHEN I LOOK AT MY WIFE 1 FEEL SO HELPLESS. SOMETIMES I THINK I JUST CAN'T STAND IT ANY LONGER. Helplessness is painful. It makes people feel childlike and weak, frightened and angry. Sometimes people pretend to themselves that they can stop the MS or could have, if only... and that makes them feel guilty. Or they try to help too much, in the wrong ways, at the wrong times. Facing that there are real limits to how much anyone can do is a fist step toward recognizing the vital role of family members in helping the person with MS feel loved and valued and as independent as possible. 10 1 CAN GIVE UP A GREAT DEAL FOR MYHUSBAND, THEN I REACH A POINT OF BEING ANNOYED. BUT It is a paradox, but true, that where people help so much that they have no time for themselves, they are not really helping as much as they think they are. Even the strongest person will at some point feel burdened and angry. He may take out his frustration on the person he wants to help or become so guilty and depressed over these natural feelings that he will have nothing left to give. While it may be difficult, family members need to arrange time for their own activities. Some communities offer respite services to give families(and people with MS) a much needed break. Support groups for family members in which people share information and strategies for coping can help overcome feelings of isolation. The understanding and guidance of people "in the same boat" can make a big difference in living with difficult situations. Some people find that stress management techniques help them cope more effectively. WE NEVER SEEM TO GO OUT OR HA VE FRIENDS ANY MORE. OVER When families are overwhelmed with the care of a chronically ill person and adjusting to new roles and responsibilities, they may have no time or energy for a social life. This can lead to feeling alone and isolated. Some people think that their friends don't understand what they are going through. Others worry that they are so depressed and preoccupied that no one will want to be with them. Unfortunately, avoiding friends or rejecting their help may push them away. While socializing may be more difficult than it has been, it is an important source of emotional well-being. It helps people feel more "normal" to be with others, to go out and do things together. ll While some friendships may flounder, most remain intact. Families often come to realize that their friends had not pulled away, but that they themselves had drawn back from their friends. Indeed, friends generally welcome learning about how the person with MS and the family are really feeling; they appreciate clear and specific instructions about how to help. WE SEEM TO BE HA VING MORE TROUBLE COPING NOW THAN WHEN MY HUSBAND WAS FIRST DIAGNOSED FIVE YEARS AGO. It is not uncommon for the kinds of stresses and painful feelings we've been discussing to occur a number of years after the MS begins. Many people with MS have little wrong with them at first, and even after a serious relapse may return to their usual level of functioning. They can get around, work, participate fully in family and social activities. It is only when the disease progresses and places limitations on daily functioning that many people begin to recognize how MS has affected their lives. I FIND IT DIFFICULT TO DEAL WITH MY HUSBAND'S LOSS OF SEXUAL FUNCTION. MS can affect sexual functioning in both men and women. As with any other chronic illness, sexual desire may fade. In addition, MS plaques in the spinal cord may interrupt the pathways for sensation and arousal in men and women and, in men, for having erections. Like other symptoms, sexual dysfunction may come and go; this unpredictability makes most people anxious about sexual involvement. As a result, they may avoid sex altogether or the anxiety itself may interfere with whatever normal sexual function remains. These kinds of sexual problems can make the entire marital relation12 ship tense and unhappy. In turn, other stresses may make it difficult for a couple to feel loving and intimate with each other. Talking openly about sexual difficulties and working together to find other ways to give and receive pleasure allow many couples to have satisfying sexual relationships. (See pamphlet: SEXUALITY AND MS.) WE BOTH WANT TO HA VE A CHILD, BUT 1 AM AFRAID PREGNANCY WILL MAKE MY WIFE'S MS WORSE. Research suggests that pregnancy has no negative effect on the overall course of the illness although there may be a greater chance of exacerbation following a pregnancy. MS does not appear to affect the developing fetus or to complicate delivery. Most neurologists would not discourage a couple from having a child. The major issue is caring for the child should the parent with MS become too disabled. Such difficulties ought not to be exaggerated or minimized, but approached realistically. Talking with people who have MS who are raising their children now can be very helpful. EVEN THOUGH 1 DON'T HA VE MS, I'VE BEEN QUITE DEPRESSED. ALL WE TALK ABOUT ARE DOCTORS AND MEDICINES. A RG UMENTS THERE IS NO FUN ANYMORE, AND MIS UNDERSTANDINGS. JUST Family members can become quite discouraged and depressed. They, too, have lost a great deal. They may feel helpless and hopeless, unappreciated and resentful. Sometimes family members feel guilty about seeking help for themselves, believing they should be tougher, or that they don't deserve the special attention of a counsellor. But how can a family member be of help to the person with MS if he or she feels beaten and demoralized'? 13 WE CAN NO LONGER SHARE THE INTERESTS AND LIFESTYLE THAT BROUGHT US TOGETHER. SOMETIMES I THINK WE'D BOTH BE BETTER OFF IF WE WERE DIVORCED. The strains that MS places on a marriage cannot be underestimated. Much of what a couple had planned and worked toward now seems impossible. Both parties feel cheated. Some couples adopt goals that are more feasible, and although disappointment remains, they can achieve these more limited aspirations. Some spouses, however, find themselves unable to give up their wishes or change their life styles and seek a separation or divorce. This, of course, is difficult for everyone. With the help of friends, family, and professionals, couples often can work out separation agreements that take into account the emotional and physical needs of both people. HOWDO WE TALK WITH OUR CHILDREN? OUR BIGGEST PROBLEM HAS ALWAYS BEEN WHAT TO TELL OUR CHILDREN. Even very young children notice slight physical changes in Mom or Dad. They readily pick up the emotional distress that their parents feel. Children may not express their worries openly and should be encouraged to share what they are thinking. This gives their parents an opportunity to clear up misconceptions and offer reassurance. Avoiding talking about 14 MS may lead a child to think that it is too terrible to talk about. (See: SOMEONE YOU KNOW HAS MS.) I KNOW I WILL START TO CRY IF I TELL MY DA UGHTER WHAT'S WRONG WITH MY WIFE. It is not harmful for a child to see a parent's genuine feelings. While it is inappropriate to burden children with adult problems, honest expression of sadness, frustration or anger makes it clear that such emotions are normal and acceptable. This also may help a child be more willing to talk about his or her own feelings. OUR SON BEGAN TO DO POORLY IN SCHOOL SHORTLY AFTER MY WIFE RETURNED HOME FROM HOSPITAL AFTER AN EXACERBATION. Children's fears often appear as changes in behaviour, withdrawal from family and friends, poor school work, and aggression. Where the home atmosphere is one in which thoughts and feelings are shared and questions are answered honestly, a child can turn to his parents for help with his worries about MS. This is an ongoing process: a child's concern will change as he grows and as the MS itself changes. I KNOW MY DA UGHTER IS HA VING A HARD IT UPSETS ME TO SEE HOW EMBARRASSED HER FATHER. TIME, BUT SHE IS OF Many older children and teenagers appear to be embarrassed by their parents. When a parent has MS, and may stumble or use a cane, these feelings are intensified. Children may worry that their friends think less of them because of their parent's disability. This embarrassment, at times, is an indirect way of 15 expressing fear, sadness, and anger. With help, perhaps by more directly expressing the underlying feelings, children can see more clearly the qualities of their parent that make them proud. MY SON SAYS HE CANNOT GO A WAY TO COLLEGE BECAUSE HE NEEDS TO BE AROUND HOME TO HELP. Children of families in which there is MS grow up with firsthand experience of what it means to be ill and disabled. Many become unusually aware of the feelings and needs of others. These valuable qualities, however, may make some children feel selfish if they seek their own goals. Children may need encouragement to balance their wishes to be helpful with their equally important desires and needs to have lives of their own. Some children who try too hard to help or are "too good" may be worried that they have done something to cause the MS. They need help to resolve this underlying fear. THE WELL PARENT AS PARENTS WE FEEL TORN BETWEEN WANTING TO DO EVERYTHING WE CAN FOR OUR DAUGHTER AND KNOWING SHE HAS TO LEARN TO DO THINGS FOR HERSELF. It is hard for the parents of young adults with MS not to be overly protective. It is terribly painful to see one's child become disabled and to face the likelihood that he or she will not have the kind of life you had dreamed of. Parents inevitably worry about who will care for their child when they are gone. But if parents, out of love and concern, do more for 16 their child than is absolutely required, then there will be no opportunity for the child to develop his or her abilities or to create a life of his or her own. Sometimes it is more helpful to be less helpful! OUR SON WAS SO ANGR Y ABOUT HIS MS THAT WE FINALLY ASKED HIM TO SEE A PSYCHIATRIST FOR HELP. HE'S BEEN IN THERA P Y FOR A FEW MONTHS NOW AND SEEMS MUCH HAPPIER. If someone needs professional help, it does not mean that the family has failed. In fact, it is best to seek counselling before a crisis develops or the distress becomes overwhelming. Many people talk more easily with someone outside the family. Professional psychotherapist (psychiatrists, psychologists, or psychiatric social workers), teachers, and clergy are valuable resources. MEMORY, PERSONALITY DEPRESSION AND WE NEVER WENT OUT BECAUSE WE WERE AFRAID TO LEA VE OUR MOTHER ALONE. SHE WAS SO FORGETFUL. It used to be thought that MS does not affect mental or cognitive functioning. This has confused family members who have noticed the person with MS becoming forgetful or acting in unusual ways. As we learn more about MS, we find that some people, to varying degrees, do have trouble with their memory. They typically forget recent events, but remember 17 " r" i _. information they have known for many years. Some people lose their tempers more easily while others become less mentally active and less interested in what goes on around them. Some people seem less concerned about social norms or may be less organized. While many people with MS do not experience any of these mental or personality changes, it is important to recognize the problem if it develops and seek professional help. Discuss the symptoms with your neurologist and ask if a consultation with a neuropsychologist would be appropriate. After thoroughly testing cognitive functioning, a neuropsychologist can recommend strategies for both patient and family that may make limitations less troublesome. There are many useful rehabilitation approaches for these problems. It is crucial to remember that these types of behavioural changes are beyond the control of the person with MS. They are the result of MS plaques in areas of the brain that affect emotions and behavior. Just as a person with MS may not walk well, he may be forgetful or behave differently. I DON'T UNDERSTAND HOW MY WIFE CAN SEEM SO CHEERFUL WHEN SHE IS SO DISABLED. In some people, MS produces a surprising lack of concern about their illness. This is called euphoria. In spite of severe disabilities, they appear cheerful. Sometimes, this is how they really feel. However, sometimes people will say they feel very sad and worried "inside" even though they seem happy on the "outside". For family members, this discrepancy may be confusing and may make it hard to respond empathically. WE COULDN'T TELL IF MY HUSBAND WAS DEPRESSED OR LOSING HIS MENTAL SHARPNESS. While it is often difficult to distinguish cognitive and person18 ality changes from depression it is important to try to do so because the treatments for depression and for changes in mental functioning are very different. Depression can make people disinterested, fatigued, withdrawn, and irritable; it can itself affect concentration and memory. A psychiatrist can determine the seriousness of a depression and whether or not psychotherapy or antidepressant medication would be beneficial. Many people are reluctant to see a psychiatrist and may miss this opportunity for help. Almost everyone with MS is depressed at some time. For some people depression is mild and passes quickly. It is similar to the grief of losing a loved one, and the support of friends and family helps the person through. For others, depression is a much more serious problem. The distress lasts for a long time, affects their sleeping and eating, and interferes with work, family, and social relationships. Some people may think life is not worth living. Some individuals may even consider suicide. These more serious depressions can often be alleviated by talking about the problem and by appropriate medications. Sometimes people are depressed without calling it depression; they may feel so ashamed that they try to hide their feelings. Clues to an underlying depression may be changes in eating and sleeping, loss of interest in former activities and people, and irritability. People who have had depressions before the MS began or who have family members who have been depressed may be more at risk for becoming seriously depressed. 19 _::-_- .... .. __[ _- _ : :IIIL _ ___ _ ......................................................... -- .... WHAT DOES THE FUTURE HOLD? MY WIFE CAN'T WORK ANY LONGER AND WE NEED HER INCOME TO MEET OUR EXPENSES. I HA VE TAKEN A SECOND JOB NOW, BUT WHO WILL MAKE DINNER AND WATCH THE KIDS IN THE EVENING? WE DON'T HAVE ANY FAMILY CLOSE BY AND WE CAN'T AFFORD TO PAY ANYONE. MS can put enormous financial burdens on a family. Not only may an important source of income be lost, but the costs of medical care, transportation, home health services, and child care can be overwhelming. Financial change involves major decisions: Should the family move to less expensive housing? Should the healthy partner take on a second job? Should a loan be sought or should the children be asked to take jobs? Should the family deplete its financial resources in order to qualify for government assistance programs? While there are no easy solutions, health and social service agencies, lawyers and financial planners, and local chapters of the Multiple Sclerosis Society of Canada are excellent sources of information. MY HUSBAND NOW NEEDS A LOT MORE HELP BUT SINCE WE DEPEND ON MY INCOME, I CAN'T STAY HOME TO CARE FOR HIM. PERHAPS HE WILL GET BE_ER CARE AND MORE A_ENTION IN A NURSING HOME. Decisions about the appropriate level of care for a severely disabled person may be extremely painful. No one wants a loved one to live in an institution, but sometimes this is the only reasonable 20 alternative. Guilt, anger, and ambivalence are inevitable feelings for the well family members. They may find support through peer groups or professional counselling. Many people have misconceptions about nursing homes. Visiting and talking to the staff and residents at several facilities may help dispel myths. Finding a nursing home near the family will make it easier, and home visits over weekend may be arranged. While nursing homes are not designed for younger persons, some do make special efforts to accommodate them. Families should explore carefully the resources in their community to find the home that best meets their needs. EVERY SO OFTEN I WONDER ALL END. WHERE THIS WILL Many people worry about the future. They find themselves thinking about wheelchairs and nursing homes and financial disaster. It is normal both to have pessimistic thoughts, and to think about how to handle such situations. But when bleak fantasies are too frequent and persistent or out of line with reality, they produce needless unhappiness. It is important to remember that most people do not have the most severe type of MS. It may be helpful to talk with your neurologist to form a realistic picture of the present situation. While no one can predict the future, your neurologist may be able to tell you about his or her experience with patients in a similar condition. Keeping one's worries to oneself only makes things worse. Sharing them will help achieve a balanced perspective. WHEN 1 TALK TO OTHER PEOPLE, IT SEEMS THERE ARE SOME PROBLEMS WE HA VE IN COMMON AND OTHERS THATARE UNIQUE TO EACH ONE OF US. In some ways families coping with MS are very similar. They have the same practical and financial burdens to bear, and 21 undergo the same emotional reactions of anger, sadness, and guilt. Families at the same developmental stage share similar difficulties. A young couple just starting out wonders about having children or staying together at all. Couples with young children have to help their children adjust to a disabled parent. An older couple has to find new ways to enjoy their leisure years. At the same time each family has its own particular stresses and styles of coping. Some couples split up, earlier or later, either because they cannot resolve their problems or because they choose this as the most reasonable course of action. Some families stay in a chronic state of unhappiness, frustration, and loneliness. Others, on their own or with professional help, find a way to make up for what is lost. They are able to talk about painful feelings -- anger, hurt, sadness -- and bring grievances into the open. They are able to identify problems in the family, both practical and emotional, and to tackle them with a sense of competency and hope. They are able to find ways to help without doing too much for the person with MS, and to take time for themselves without feeling guilty. Perhaps the most important feature of this ideal family is that the members talk openly with one another and show respect for each other's feelings and wishes. They also recognize that many of life's problems have nothing at all to do with MS. 22 This publication was developed through the generosity of the Bafalin Fund of the Massachusetts Chapter, National Multiple Sclerosis Society. ABOUT THE AUTHORS Sarah L. Minden, MD is a psychiatrist at the Brigham and Women's Hospital and Cambridge Hospital, Harvard Medical School, Boston, MA. She works with persons with MS and their families and conducts research on the psychological aspects of MS. Debra Frankel, MSc, OTR is the Director of Support Services for the Massachusetts Chapter, National Multiple Sclerosis Society and is a Special Projects Consultant to the National Society staff. She has authored and edited several publications about MS in her years with the MS Society. (Canadian edition translated and printed by the Multiple Sclerosis Society of Canada. ) 23 PUBLICATIONS* • MS and Its Effects on You and Those You Love edited by Deanna Groetzinger, MA, Multiple Sclerosis Society of Canada • Emotional Aspects of MS by Floyd A. Davis, MD et al, National Multiple Sclerosis Society • Sexuality and Multiple Sclerosis by Michael Barrett, PhD, Multiple Sclerosis Society of Canada • Coping with Fatigue in MS by Alexander Burnfield MB, MRC Psych. • Understanding Bladder Dysfunction by Nancy J. Holland, RN, MA, and Michele G. Madonna, RN, MA, National Multiple Sclerosis Society • Healthy Eating by Erla Wankling, RD, and Doreen Abbott, PHEc, Multiple Sclerosis Society of Canada • Pain and Multiple Sclerosis, National Multiple Sclerosis Society • Becoming A Parent by Adele Sadovnick, PhD, Multiple Sclerosis Society of Canada • Someone You Know Has Multiple Sclerosis by Patricia Dick et al, National Multiple Sclerosis Society • Doctor-patient dilemmas in multiple sclerosis by Alexander Burnfield MB, MRC Psych. • You and Your Family Physician by Ruth Sky, MD, FCFP * Available from the Multiple Sclerosis Society of Canada national office or your local MS Society chapter. 24 Multiple Sclerosis Society of Canada Division Offices Atlantic Division 71 Ilsley Avenue, Unit 12 Dartmouth, NS B3B IL5 (902) 468-8230 Saskatchewan Division 150 Albert St. Regina, SK S4R 2N2 (306) 522-5600 Quebec Division 666 Sherbrooke St. W., Suite 1500 Montreal, QC H3A I E7 (514) 849-7591 Alberta Division 10104 - 79th St. Edmonton, AB T6A 3G3 (780) 463- l 190 Ontario Division 250 Bloor St. E., Suite 1000 Toronto, ON M4W 3P9 (416) 922-6065 British Columbia Division II 30 West Pender St, Suite 1600 Vancouver, BC V6E 4A4 (604) 689-3 !44 ManitobaDivision 141 Bannatyne Ave., Suite 400 Winnipeg, MB R3B 0R3 (204)943-9595 NationalOffice 250 Bloor St. E., Suite 1000 Toronto, ON M4W 3P9 (416)922-6(165 Call toll-free in Canada 1 800 268-7582 http://www.mssociety.ca [email protected] 25 A CKNO WLEDGEMENTS The authors wish to acknowledge the following persons who contributed to this booklet: Beveley Brown RN, MEd; Pam Cavallo, MSW; Linda Samuel, MSW; David Luterman, DEd; Joyce Rich, MSW; James Lehrich, MD; H. Richard Tyler, MD; Lynn Stazzone, RN; James E. Miller, PhD. The original booklet was designed by Diane Fiedler, Boston, MA. © 1987 Massachussetts Chapter National Multiple Sclerosis Society 400-1 Totten Pond Road Waltham, MA 02154 1992, updated and reprinted Multiple Sclerosis Society of Canada MS Multiple Sclerosis Society of Canada 250 BIoor St. E., Suite 1000 Toronto, Ont. M4W 3P9 C31E 12/00 (Disponible en franqais)