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

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Presentation on theme: "Multiple Sclerosis: An Overview of the Disease and Its Impact on Individuals and Families."— 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

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 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.

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

7 What Causes MS? Genetic Predisposition Environmental Trigger Immune Attack Loss of myelin & nerve fiber

8 What happens in MS?...cross the blood-brain barrier… …launch attack on myelin & nerve fibers... “Activated” T cells... …to obstruct nerve signals myelinated nerve fiber

9 What happens to the myelin and nerve fibers?

10 What are possible symptoms?  Cognitive difficulties (memory, attention, processing)  Pain (neurogenic)  Heat sensitivity  Spasticity  Gait, balance, and coordination problems  Speech/swallowing problems  Tremor  Fatigue (most common)  Decreased visual acuity, diplopia  Bladder and/or bowel dysfunction  Sexual dysfunction  Paresthesias (tingling, (numbness, burning)  Emotional disturbances (depression, mood swings)  MS symptoms vary between individuals and are unpredictable

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

12 What tests may be used to help confirm the diagnosis? Magnetic resonance imaging (MRI) Visual evoked potentials (VEP) Lumbar puncture

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)

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)

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

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)

17 Relapsing-Remitting MS Increasing disability time

18 Secondary-Progressive MS Increasing disability time

19 Primary-Progressive MS Increasing disability time

20 Progressive-Relapsing MS Increasing disability 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

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

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

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]

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

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

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.

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

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

31 What is there to grieve about? MS is a new piece that needs to find its place in the puzzle 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.

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

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

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.”

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

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

38 … the part that MS can ’ t touch Every person needs to find his or her MS- free zone 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

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).

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.

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

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).

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 (1-800-344-4867) 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: http://MSClinicalCareNetwork.org Email:  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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