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What does MS look like? Julia—a 35yo white married mother of 3 who is exhausted all the time and can’t drive because of vision problems and numbness in.

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Presentation on theme: "What does MS look like? Julia—a 35yo white married mother of 3 who is exhausted all the time and can’t drive because of vision problems and numbness in."— Presentation transcript:

1 Multiple Sclerosis: An Overview of the Disease and Its Impact on Individuals and Families

2 What does MS look like? Julia—a 35yo white married mother of 3 who is exhausted all the time and can’t drive because of vision problems and numbness in her feet Jackson—a 25yo African-American man who stopped working because he can’t control his bladder or remember what he read in the morning paper Maria—a 10yo Hispanic girl who falls down a lot and whose parents just told her she has MS Loretta—a 47yo white single woman who moved into a nursing home because she can no longer care for herself There are many different faces of MS. The disease is so variable from one person to another that no two people experience it in exactly the same way.

3 What else does MS look like?
Sam—a 45yo divorced white man who has looked and felt fine since he was diagnosed seven years ago Karen—a 24yo single white woman who is severely depressed and worried about losing her job because of her diagnosis of MS Sandra—a 30yo single mother of two who experiences severe burning pain in her legs and feet Richard—who was found on autopsy at age 76 to have MS but never knew it Jeannette—whose tremors are so severe that she cannot feed herself

4 19th Century Highlights Jean Cruveilhier is credited with one of the earliest, if not the first, illustrations of MS-related central nervous system pathology, in around 1841. Jean-Martin Charcot, in the late 1860s, was the first to describe the clinical and pathological features of MS in such a way that others could recognize the disease. He first became aware of the disease by asking a woman who had some motor problems to serve as his housemaid so that he could observe her gradually-changing condition. MS-related central nervous system pathology—Jean Cruveilhier, c 1841 Jean-Martin Charcot (1825–1893) described features of MS

5 What MS Is: MS is thought to be a disease of the immune system.
The immune system damages the myelin coating around the nerves in the central nervous system (CNS—brain, spinal cord, and optic nerves) and the nerve fibers themselves. Its name comes from the scarring caused by inflammatory attacks at multiple sites in the central nervous system. The expert consensus is that MS is an immune-mediated disease—that is, a disease of the immune system. It is not known at this time whether MS is autoimmune or another type of immune-mediated disease process.

6 What MS Is Not: MS is not: Contagious Directly inherited
Always severely disabling Fatal—except in fairly rare instances Being diagnosed with MS is not a reason to: Stop working Stop doing things that one enjoys Not have children People with MS have very close to a normal life expectancy. There are some individuals in whom a very rapid and severe disease course leads to death, and there are some in whom the complications of the disease become so debilitating that death eventually results. In addition, the suicide rate in people with MS is significantly higher than in the general population, with depression being the single greatest risk factor. Death certificate-based reviews indicate that suicide may be the cause of death for MS clinic attendees in as many as 15% of all cases (Sadovnick et al 1991). While people with MS used to be encouraged to give up most of their work and family dreams, they are now encouraged to keep their lives as full, productive, and busy as they are able and interested in having them be.

7 What Causes MS? Genetic Predisposition Environmental Trigger
Immune Attack This diagram illustrates that when a person who is genetically susceptible encounters the (as yet unknown) environmental trigger, the immune-mediated response is initiated, causing damage in the central nervous system. Loss of myelin & nerve fiber

8 What happens in MS? ...cross the blood-brain barrier…
“Activated” T cells... ...cross the blood-brain barrier… …launch attack on myelin & nerve fibers... Although scientists are still working out the details of the immune attack in MS, the basic steps involved appear to be as follows: Misguided immune cells—called T cells—cross the blood-brain barrier (BBB) into the CNS. The BBB, which is thought to consist of walls of capillaries in the CNS, usually prevents or slows the passage of undesirable substances (e.g., disease-causing organisms) from the blood into the CNS. These T cells release chemicals that rally other immune system forces that attack the myelin coating around the nerve cells, as well as the cells that manufacture myelin. This attack causes inflammation and then destruction. The nerve fibers themselves also come under attack. Once the myelin and nerve fibers have been damaged, nerve signals are slowed or stopped. MS lesions (damaged areas as seen on MRI) form, with hardened scars or plaques that may impair normal myelin repair processes. …to obstruct nerve signals myelinated nerve fiber

9 What happens to the myelin and nerve fibers?
This drawing shows the steps involved in the damage to the myelin and axons. The yellow segments represent the myelin coating. One area of myelin has been damaged. The immune attack becomes directed toward the axon itself. The axon is severed. Myelin has some ability to repair itself, and the potential of myelin repair is an area of intensive research at this time. Once the axons are damaged, however, they cannot be repaired. Because axonal damage can occur even in the earliest stages of the disease, early treatment with a disease-modifying medication should be considered by anyone with a confirmed diagnosis of MS.

10 What are possible symptoms?
MS symptoms vary between individuals and are unpredictable Fatigue (most common) Decreased visual acuity, diplopia Bladder and/or bowel dysfunction Sexual dysfunction Paresthesias (tingling, (numbness, burning) Emotional disturbances (depression, mood swings) Cognitive difficulties (memory, attention, processing) Pain (neurogenic) Heat sensitivity Spasticity Gait, balance, and coordination problems Speech/swallowing problems Tremor Any or all of these symptoms are possible in MS, depending on where in the CNS the lesions form. Only the symptoms that appear in orange are readily visible—which means that what you see when you look at a person with MS is probably only the “tip of the iceberg.” Some people develop only one or two of these symptoms over the course of the disease, while other people may develop several. Fatigue is the most common symptom of MS. In addition to “primary MS fatigue,” which results from impaired nerve transmission, there can be added fatigue caused by depression, disturbed sleep (e.g., by pain, nocturia, PLMs), impaired mobility, and some medications.

11 How is MS diagnosed? MS is a clinical diagnosis: Signs and symptoms
Medical history Laboratory tests Requires dissemination in time and space: Space: Evidence of scarring (plaques) in at least two separate areas of the CNS (space) Time: Evidence that the plaques occurred at different points in time There must be no other explanation There is no single test that can determine if a person has MS. The current criteria for the diagnosis of MS require evidence of plaques that occurred in different places in the CNS at different points in time. This is why it can sometimes take months or even years to confirm the diagnosis. Until evidence of a second attack can be found, the current criteria for the diagnosis of MS have not been met.

12 What tests may be used to help confirm the diagnosis?
Magnetic resonance imaging (MRI) Visual evoked potentials (VEP) Lumbar puncture MRI makes it possible to visualize and count lesions in the white matter of the brain and spinal cord. Evoked potentials are recordings of the nervous system’s electrical responses to the stimulation of specific sensory pathways. Since damage to myelin results in a slowing of response times, EPs can identify areas of damage along specific nerve pathways whether or not the person is experiencing any symptoms. VEPs are considered the most useful for diagnostic purposes. Lumbar puncture is used to examine CSF for changes that are characteristic of MS.

13 Who gets MS? Usually diagnosed between 20 and 50
Occasionally diagnosed in young children and older adults More common in women than men (2-3:1) Most common in those of Northern European ancestry More common in Caucasians than Hispanics or African Americans; rare among Asians More common in temperate areas (further from the equator) Note: Because MS is thought of primarily as a disease of young white women, individuals in other groups may find it harder to: get a diagnosis adjust to the diagnosis

14 What is the genetic factor?
The risk of getting MS is approximately: 1/750 for the general population (0.1%) 1/40 for person with a close relative with MS (3%) 1/4 for an identical twin (25%) 20% of people with MS have a blood relative with MS The risk is higher in any family in which there are several family members with the disease (aka multiplex families) MS is not directly inherited like hair or eye color. If heredity were the only factor, the risk for an identical twin would be 1/1 instead of 1/4. A close – or first degree – relative is a parent, child, or sibling.

15 What is the prognosis? One hallmark of MS is its unpredictability.
Approximately 1/3 will have a very mild course Approximately 1/3 will have a moderate course Approximately 1/3 will become more disabled Certain characteristics predict a better outcome: Female Onset before age 35 Sensory symptoms Monofocal rather than multifocal episodes Complete recovery following a relapse It’s important to remember that the majority of people with MS do not become severely physically disabled. Most will remain able to walk, although they may need an assistive device—such as a cane or walker—to do so. That being said, people who remain fully ambulatory may still be unable to work or function comfortably at home because of cognitive changes or other symptoms that interfere with everyday activities. Some people have a “benign” course of MS that remains mild throughout their lifetime. The challenge is that it is impossible to determine at the outset who will do fine and who will experience disabling symptoms 5, 10, or 20 years down the road. Therefore, most MS specialists recommend early treatment, as we’ll talk about in a few minutes.

16 What are the different patterns (courses) of MS?
Relapsing-Remitting MS (RRMS) Secondary Progressive MS (SPMS) Primary Progressive MS (PPMS) Progressive-Relapsing MS (PRMS) Four disease courses have been identified in MS. These will be described in more detail in the next few slides

17 Relapsing-Remitting MS
Increasing disability The majority of people (75-85%) initially experience attacks (relapses) followed by periods of full/partial recovery (remissions), with no progression of disability between attacks. Top of the slide: the person returns to baseline following each attack, with no residual deficits or progression of disability along the way. Bottom of the slide: the person has some cumulative residual deficits following each attack, but there is no evidence of disease progression between the attacks. time

18 Secondary-Progressive MS
Increasing disability Following an initial R-R course, the disease progresses at a variable rate, with or without occasional relapses or plateaus. Natural history studies indicate that of those who start with RRMS, 50% will develop SPMS within 10 years, 90% within 25 years. We do not yet know the impact of the DMTs on the natural history of the disease. Top of the slide: Following two attacks without any residual deficits or disease progression, the disease begins to progress more consistently, with gradually increasing disability. Attacks (exacerbations) no longer occur. Bottom of the slide: Following an initial attack with complete recovery, the disease begins to progress more consistently, with an occasional attack superimposed on the disease progression. time

19 Primary-Progressive MS
Increasing disability A small percentage (10%) of people experience progression from onset, with no attacks along the way. Top of the slide: the disease progression is steady from onset, without any attacks along the way Bottom of the slide: the disease progression is steady from onset, with small attacks or flare-ups superimposed along the way. time

20 Progressive-Relapsing MS
Increasing disability In the rarest pattern of MS, people experience progression from onset, with some relapses along the way. The graphs show steady progression of disease from onset, but with definite attacks along the way. The difference between the top and bottom sections of the slide is that the top graph represents someone who returns to baseline following each of the episodes, while the bottom shows someone in whom each attack leaves additional deficits, with no return to baseline. time

21 Who is on the MS “Treatment Team”?
Neurologist Urologist Nurse Physiatrist Physical therapist Occupational therapist Speech/language pathologist Psychiatrist Psychotherapist Neuropsychologist Social worker/Care manager Pharmacist No single practitioner can address all of the problems potentially created by MS. The ideal treatment team, whether located in a single center, or spread out in the community, should include a variety of specialties. While most people with MS are treated by a neurologist, most do not have ready access to this kind of comprehensive care team. A major challenge for patients and families in today’s healthcare system is coordinating the care provided by these specialists.

22 What are the treatment strategies?
Gone are the “Diagnose and Adios” days of MS care Management of MS falls into five general categories: Treatment of relapses (aka exacerbations, flare-ups, attacks—that last at least 24 hours) Symptom management Disease modification Rehabilitation (maintain/improve function) Psychosocial support The days of “diagnose and adios” in MS care (so labeled by Dr. Labe Scheinberg whom many consider to be the father of the comprehensive care model in MS) are long gone. While we do not have a cure for MS, we have a variety of treatment and management strategies to minimize the impact of MS on everyday life.

23 How are relapses treated?
Not all relapses require treatment Mild, sensory sx are allowed to resolve on their own. Sx that interfere with function (e.g., visual or walking problems) are usually treated 3-5 day course of IV methylprednisolone—with/without an oral taper of prednisone High-dose oral steroids used by some neurologists Rehabilitation to restore/maintain function Psychosocial support While corticosteroids reduce inflammation, they are not thought to have any long-term effect on the disease. They are used primarily in exacerbations that are significantly impacting a person’s ability to function. Chronic, long-term use of steroid medications poses significant health risks (osteoporosis, glaucoma, gastrointestinal problems, etc.). Steroids can cause significant emotional upheaval in some people—including feelings of being “high” or manic while on the medication, followed by strong feelings of let-down or depression when coming off the medication. Some people may require a medication such as Depakote® to handle these severe swings. People may react differently to the medication at different times.

24 How is the disease course treated?
Nine disease-modifying therapies are FDA-approved for relapsing forms of MS: fingolimod (Gilenya®) [oral] interferon beta-1a (Avonex® and Rebif®) [inj.] interferon beta-1b (Betaseron® and Extavia®) [inj.] glatiramer acetate (Copaxone®) [inj.] natalizumab (Tysabri®) [inf] mitoxantrone (Novantrone®) [inf] teriflunomide (Aubagio®) [oral] These medications differ somewhat in their mode of action, dosage levels, route of delivery, frequency of injection/infusion, and side effect profile. The first-line injectable treatments (in orange) are given by injection on a schedule ranging from once per week to QD. Avonex is given IM; the others are SQ. Many people self-inject; others need someone else to assist them. The first-line oral medications are in blue. These are approved by the FDA as first-line treatments but physicians differ in their willingness to use them as first-line medications because of their more significant side effects. The infused medications are in gray; they are generally reserved for those patients who have not received sufficient benefit from one or more of the first-line medications. Mitoxantrone is the only FDA-approved medication for secondary-progressive MS. Patients work with their neurologist to determine which medication would be most suitable. Taking both the disease course and the patient’s lifestyle into account will enhance the likelihood of treatment adherence. Not all insurance formularies include all of these (expensive) medications; each of the pharmaceutical companies does have a patient assistance program to help people obtain their medication. Tysabri is for people with relapsing forms of MS. It is approved as a monotherapy and is generally recommended for those people who have not gotten sufficient benefit from the injectables or can’t tolerate the side effects. Associated risk of PML (1/1000), a serious infection that is generally fatal. Tysabri may be used as a first-line therapy for someone with very active disease. Novantrone is also reserved for those patients in whom the disease is progressing in spite of treatment with the disease-modifying medications. Associated cardiac risk as well as increased incidence of leukemia.

25 What do the disease-modifying drugs do?
All reduce attack frequency and severity, reduce scarring on MRI, and probably slow disease progression. These medications do not: Cure the disease Make people feel better Alleviate symptoms Unlike antibiotic medications we take for an acute condition like strep throat or bronchitis, or the symptom management medications we take for a headache or cold, these disease-modifying medications are designed for long-term use. These medications will not cure MS or make it feel better. They are designed to reduce the number and severity of attacks and alter the course of the disease. It is virtually impossible for a person to know if the drug is “working” at any given time.

26 How important is early treatment?
The Society’s National Clinical Advisory Board recommends that treatment be considered as soon as a dx of relapsing MS has been confirmed. Irreversible damage to axons occurs even in the earliest stages of the illness. Tx is most effective during early, inflammatory phase Tx is least effective during later, neurodegenerative phase No treatment has been approved for primary-progressive MS. Approximately 60% of PwMS are on Tx The Society’s Disease Management Consensus Statement (revised 2007) is available on the NMSS website. Since irreversible axonal damage can occur very early in the disease course, a major goal of early treatment is to try and prevent that from happening.

27 So what do we know about MS?
MS is a chronic, unpredictable disease. The cause of MS is still unknown. MS affects each person differently; symptoms vary widely. MS is not fatal, contagious, directly inherited, or always disabling. Early diagnosis and treatment are important: Significant, irreversible damage can occur early on. Available treatments reduce the number of relapses and may slow progression. Treatment includes: relapse management, symptom management, disease modification, rehabilitation, emotional support.

28 What can people do to feel their best?
Reach out to their support system; no one needs to be alone in coping with MS. Stay connected with others; avoid isolation. Become an educated consumer. Make thoughtful decisions regarding: Disclosure Choice of physician Employment choices Financial planning Be aware of common emotional reactions. People with MS are bombarded by advertisements on the Internet and by suggestions from well-meaning friends. People need to choose a neurologist who is knowledgeable about MS and with whom they feel comfortable. Referrals are available from the National MS Society chapter, but insurance plans may limit options. They need to become educated consumers who can carefully evaluate the information they receive. They can contact the National MS Society with questions about treatments and “cures” they hear about from others.

29 Why is MS such a challenging disease?
Multiple sclerosis: Is a chronic disease with no known cure or completely effective treatments Is variable and unpredictable—with no clear roadmap Involves ongoing change and loss Is very expensive Confronts people with complex choices for which the right and wrong options aren’t clearly marked The remaining portion of this presentation describes the most common challenges confronting individuals and families living with MS. Although we have a greater understanding of this disease and its management, we do not yet have a cure. People diagnosed in early adulthood will be living with it for decades. The hallmark of MS is its unpredictability, and it is this characteristic that the majority of people with MS and their family members find most difficult to handle. The disease is characterized by change and loss, whether of function, abilities, valued activities, or simply of a sense of control over one’s body and life. MS can drain a family’s valuable resources, including $$$, time, emotional energy. While the financial implications are fairly clear, family members often need help in understanding how to “manage” the less tangible resources as well. When too many of these important resources are drained by the MS, the needs of other family members may go unmet, resulting in a “disabled family” rather than a family with a disabled person in it. People with MS now have a variety of life choices available to them that didn’t previously exist (treatment options, employment options, child-bearing options). Much of their distress now focuses around fear of making the wrong choices.

30 What are the most common feelings among people living with MS?
Grief: normal reaction to any loss Of self, personal identity, feelings of autonomy and control, skills/abilities Anxiety: common response to unpredictability Anger: common response to unpredictability and loss of control Guilt: over letting others down; over angry feelings (toward partners, doctors, and God) These reactions will ebb and flow with the ups and downs of the disease course Grief is a prominent part of life with MS. It will ebb and flow over the course of the illness as people face changes in functional abilities. This healthy grieving needs to be distinguished from clinical depression, which is also quite common in MS. Most people look forward to adulthood as a time when they will feel more in control of their lives. For many, the diagnosis of MS is the first significant challenge to their feeling of control and invulnerability. People with MS cannot predict how they are going to feel or function from morning to afternoon, let alone from one week or month to the next. And when basic functions like thinking, bladder and bowel control become less predictable, people become very anxious. Anger in response to loss of control and unpredictability is normal; the challenge lies in knowing where to direct the anger and how to put it to use. The anger may be directed at the healthcare system, family members, or God; the goal is to help the person channel it effectively. Guilt is common among people with MS and their family members—feelings relating to not meeting their own expectations of themselves and/or the expectations of others.

31 What is there to grieve about?
MS is a new piece that needs to find its place in the puzzle A helpful analogy for people are the jigsaw puzzles made out of photographs. If people can imagine the puzzle as a self-image that has been slowly pieced together over a lifetime, the diagnosis of a chronic disease represents a new oddly-shaped piece that somehow needs to be fit into the puzzle. Some people “go to pieces” with the news of MS—as if they had thrown their puzzle into the air; Others refuse to acknowledge the MS and try to avoid adding this new piece to their self-image for as long as possible; Still others engage in a gradual process of education and adaptation that allows them to acknowledge the MS as a new part of themselves . Kalb, 2008

32 What else is there to grieve about?
Every time that MS changes the things a person is able to do, or changes the way he or she has to do, grieving is the first—and necessary—response. Letting go of the past is the first step toward managing the present and planning for the future. Each time the person experiences a significant change or loss in his/her ability to do things, the picture puzzle (self-image) needs to accommodate that as well.

33 What are the major challenges for the person newly-diagnosed with MS?
Dealing with invisible sx: “But you look so good!” People seldom feel as good as they look Finding the right doctor Locating an MS specialist Finding a doctor to “partner” with Making difficult treatment decisions “When should I start treatment?” “Which medication is the right one for me?” Making disclosure decisions Why, whom, what, and when to tell “But you look so good” is a painful message for many people. While often meant to be a compliment, it may also be an expression of the speaker’s need to reassure him- or herself that the person with MS is OK. It may also express a message of disappointed expectations (if you look so good, why aren’t you able to do the things I need you to do?). This is One of the biggest challenges is dealing with family members who don’t understand/accept what the person is experiencing. Finding a neurologist with expertise in MS, with whom to discuss challenging treatment decisions, can be challenging. The Society can help people locate neurologists in their area. Deciding whom to tell about the diagnosis and when can be very difficult. While some rush to tell everyone because they are so relieved to finally have an answer, others want to keep it a total secret. The best strategy is somewhere in between. People need to think through disclosure decisions carefully since they have significant ramifications, particularly on employment.

34 And as if those weren’t enough, here are some more….
Dealing with the reactions of others Being ready to explain, comfort, explain again Identifying/communicating one’s needs to others Recognizing that others can’t read one’s mind Building a support network Family, friends, community resources, and the NMSS Beginning to plan for uncertainty Maintaining employment Financial planning People with MS often have to educate/reassure others just when they most need support themselves. How he or she conveys information about the illness to others will determine in large part how they respond to it. People with MS need to take responsibility for conveying their needs to others because no one can read their minds. They may resist asking for help because they want to be independent or don’t want to be a bother or don’t want to be thought of as disabled, but then resent it when others don’t anticipate their needs and offer assistance. Most people resist planning for the future, particularly when the future seems frightening. To jumpstart the process, listen to people’s fears (e.g., needing a wheelchair, becoming to disabled to work, etc.). Once a fear has been expressed, encourage a discussion about what steps they would make to cope and minimize the impact. While most people with MS do not become severely disabled, having plans in place to deal with it helps people feel less vulnerable.

35 What are the major challenges for the person with transitional MS?
Finding meaning in disease progression Lousy luck “I got dealt a bad hand.” Personal failure “I must not be trying… praying…exercising enough.” Weakness “I’m not strong enough to fight this.” Punishment “I must have done something bad.” Most people do not understand that the transition to secondary-progressive MS is part of the natural history of the disease. While the disease-modifying drugs slow progression, we don’t yet know if they change the disease’s natural history. Before the advent of the disease-modifying medications, this transition was not a major issue for people. Because the medications were originally approved only for people with relapsing-remitting disease, those who were SP were often excluded from treatment. The interferon medications are now approved for all relapsing forms of MS (including those with SPMS who are still having relapses). There is considerable anxiety around the transition, with patients attributing their own personal meaning to it. We need to be particularly alert to those who attribute self-blame. Patients who may be particularly prone to self-blame are those who told themselves initially that they would be the one to “beat this disease.” The goal with patients like these is to help them set more realistic goals: instead of fighting a “war” they cannot win (i.e., we have no cure for MS), they should focus on identifying particular “battles” on which to focus their energies (e.g., managing their fatigue, taking a disease-modifying medication, requesting adaptations at work, utilizing appropriate assistive devices to help them do the things that are important to them).

36 More Challenges for the Person with Transitional MS
Resistance “I don’t feel any better and my MS is worse, so why take shots all the time?” Turning to “miracle cures” Inability to perform major roles Need for more planning/problem-solving Impacted by depression and cognitive symptoms Anxiety about disease progression, increasing disability, and available treatments is common. Those patients who have progressed in spite of taking a disease-modifying therapy or feel worse instead of better (even though these medications do not relieve symptoms or make people feel better), may resist their injections. It is difficult for people to maintain a treatment from which they are not feeling or seeing the results they hoped for. This is often a time when people look to fad treatments, cures advertised on the Internet, etc., particularly if they are no longer considered candidates for one of the of the disease-modifying drugs (e.g., if they are no longer having relapses).

37 What are the major challenges for the person with advanced MS?
The grief work continues; more progression  more loss Re-defining ideas of self, control, and independence Finding the MS-free zone Grieving is an ongoing, if intermittent process. SELF: Who am I now that I can no longer do the things I used to do? What are my strengths? What do I have to offer? Who am I to others? CONTROL: What does control mean to me? Do I assume control of my life and my body by accessing available resources? Using adaptive equipment? Managing the aides who help me? Working with my healthcare team to manage my MS? Engaging in effective planning and problem-solving? INDEPENDENCE: Am I willing to do things differently in order to do them independently? Can I allow myself to see the use of assistive technology as taking charge of my disease rather than giving in to it?

38 Every person needs to find his or her MS-free zone
…the part that MS can’t touch The “MS-free zone” is a part of oneself that the MS can’t touch. It is different for every person (e.g., religious faith, sense of humor, love of music, grandchildren, etc.). It is an internal source of emotional energy, a resource one can use to find respite from painful emotions and seemingly insurmountable obstacles. When patients are feeling that MS has attacked or damaged every part of their lives, we can help identify and nurture their MS-free zone. An effective exercise for individuals and groups: ask people to draw a pie chart representing themselves and show how much of their pie is MS. The goal is to help people recognize that they are more than their MS and to find ways to minimize the extent to which MS “takes over.” Kalb et al., 2007

39 Progressive, Disabling MS, cont’d
Identifying new goals, directions, areas of focus Coping with caregiving challenges Dealing with long-term care options When impairments have compromised a person’s ability to do many of the things that are important to them, they may need our assistance to identify new goals, new sources of satisfaction in their lives. The needs of caregivers could be the subject of an entire training. MS caregivers may be spouses/partners, parents, adult children, and sometimes even young children. Patients and caregivers often need help communicating their respective needs. Too often they engage in a silent battle over who has it worse—the person with debilitating disease or the person whose life is drastically altered by a disease that isn’t even their own. Long-term care includes a continuum of options from assistance in the home to daycare programs,assisted living facilities, and nursing homes. Families often end up making important decisions during times of crisis when they are least able to consider the options carefully. There is a tremendous amount of anxiety, guilt, and anger surrounding many of these decisions, and family members may need professional assistance to talk through the options, consider the needs of all concerned, and then live with whatever decisions they have made.

40 What do we know about depression in MS?
Differs from normal grieving Can be challenging to diagnose in MS because of overlapping symptoms People with MS are at greater risk for depression than: the general population people with other chronic diseases 50+% of people will experience a major depressive episode at some point over the course of the disease. At-risk points: diagnosis, relapses, major transitions, any time Suicide is 7.5x more common in MS than in general population (Sadovnick et al., 1991). The greatest risk factor for suicide in MS is depression, so prompt recognition and treatment of depression are critical. In one study, depression together with alcohol abuse and social isolation accounted for an 85% predictive accuracy for suicidal intent (Feinstein, 2002).

41 What do we know about cognitive changes in MS?
50-60% of people experience cognitive changes. Most commonly-affected functions: memory, information processing, executive functions Cognitive function correlates with number of lesions and lesion area on MRI, as well as brain atrophy. Cognitive dysfunction can occur at any time—even as a first symptom—but is more common later in the disease. Early recognition is important Cognitive dysfunction and fatigue are primary reasons for early departure from the workforce. Compensatory strategies are the most effective intervention. It is important for all of us to keep in mind that there is, in fact, little relationship between degree of cognitive impairment and either global neurologic impairment or duration of disease. That means that when a person with MS comes into your office, you cannot make any assumptions about his or her level of cognitive impairment. A person with significant physical impairment may be cognitively intact while a person with no visible limitations may be significantly cognitively impaired. Cognitive symptoms can worsen during an exacerbation, just like physical symptoms, and then gradually improve as the exacerbations subsides. Fortunately, most people’s cognitive symptoms progress slowly, providing opportunity for successful remediation efforts. Some of the medications a person is taking may also impact cognition by producing drowsiness or impaired thinking.

42 What happens when one member in a family is diagnosed with MS?
MS is like an uninvited guest: Shows up without warning Has its own way of doing things Takes up space in every room Is a stranger to everyone Doesn’t go home The “uninvited” guest can be a very helpful analogy for families—something they can all relate to.

43 What are the family’s biggest challenges?
Family members react in their own way/in their own time. Each person needs to make peace with the stranger in the house. Family needs to learn how to make some space for MS without giving it more than it needs. Family resources need to be shared equally (MS is greedy). Family members tend to have varied coping mechanisms and emotional styles, with the result that they often feel out of synch with one another. Learning to acknowledge and accept each other’s coping styles can sometimes be quite difficult (e.g., one person’s lack of communication may easily be misinterpreted by another as not caring). While one person in the household has the disease, it impacts every other family member as well. Each person needs to figure out how to react to it and live with it. Individuals and families need to find a way to accommodate the demands of the illness without letting it become the center of everything. (Dr. Peter Steinglass refers to it as “Finding a place for the illness while keeping the illness in its place”).

44 Here’s one child’s view of MS

45 So what do we know about the challenges for people with MS and their families?
Some people have to wait a very long time for a confirmed diagnosis of MS. There is no clear roadmap once the diagnosis is made. There are no pre-determined stages of adjustment; emotional reactions ebb/flow with the disease. Adaptation is a more realistic than acceptance. MS is like an uninvited guest in the household. Family members share the impact. The major challenge for individuals and families: To find a place for the illness while keeping the illness in its place.

46 Society Resources for People with MS
40+ chapters around the country Web site ( Access to information, referrals, support ( ) Educational programs (in-person, online) Support programs (self-help groups, peer and professional counseling, friendly visitors) Consultation (legal, employment, insurance, long-term care) Financial assistance

47 Society Resources for Clinicians
MS Clinical Care Network Website: Clinical consultations with MS specialists Literature search services Professional publications Quarterly professional e-newsletter Professional education programs (medical, rehab, nursing, mental health) Consultation on insurance and long-term care issues

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