Transcript PowerPoint_Template - National Multiple Sclerosis Society

Multiple Sclerosis:
An Overview of the
Disease and Its Impact
on Individuals and
Families
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
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
19th Century Highlights
MS-related central nervous system
pathology—Jean Cruveilhier, c 1841
Jean-Martin Charcot (1825–1893)
described features of MS
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.
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
What Causes MS?
Genetic
Predisposition
Environmental
Trigger
Immune Attack
Loss of myelin
& nerve fiber
What happens in MS?
“Activated” T cells...
...cross the blood-brain barrier…
…launch attack on myelin & nerve fibers...
…to obstruct nerve signals
myelinated nerve fiber
myelinated nerve fiber
What happens
to the myelin and nerve fibers?
What are possible symptoms?

MS symptoms vary between individuals and are unpredictable
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Fatigue (most common)
Decreased visual acuity,
diplopia
Bladder and/or bowel
dysfunction
Sexual dysfunction
Paresthesias (tingling,
(numbness, burning)
Emotional disturbances
(depression, mood swings)
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Cognitive difficulties
(memory, attention,
processing)
Pain (neurogenic)
Heat sensitivity
Spasticity
Gait, balance, and
coordination problems
Speech/swallowing
problems
Tremor
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
What tests may be used to help
confirm the diagnosis?
• Magnetic resonance
imaging (MRI)
• Visual evoked potentials
(VEP)
• Lumbar puncture
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)
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)
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
What are the
different patterns (courses) of MS?
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Relapsing-Remitting MS (RRMS)
Secondary Progressive MS (SPMS)
Primary Progressive MS (PPMS)
Progressive-Relapsing MS (PRMS)
Increasing disability
Relapsing-Remitting MS
time
Increasing disability
Secondary-Progressive MS
time
Increasing disability
Primary-Progressive MS
time
Increasing disability
Progressive-Relapsing MS
time
Who is on the MS “Treatment Team”?
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Neurologist
Urologist
Nurse
Physiatrist
Physical therapist
Occupational therapist
Speech/language pathologist
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Psychiatrist
Psychotherapist
Neuropsychologist
Social worker/Care manager
Pharmacist
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
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
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]
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
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
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.
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.
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
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
What is there to grieve about?
MS is a new piece
that needs to find its
place in the puzzle
Kalb, 2008
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.
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
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
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.”
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
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
Every person needs to find his or her MSfree zone
• …the part that MS can’t touch
Kalb et al., 2007
Progressive, Disabling MS, cont’d
• Identifying new goals, directions, areas of focus
• Coping with caregiving challenges
• Dealing with long-term care options
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).
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.
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
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).
Here’s one child’s view of MS
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.
Society Resources for People with MS
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40+ chapters around the country
Web site (www.nationalMSsociety.org)
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
Society Resources for Clinicians
• MS Clinical Care Network
Website: http://MSClinicalCareNetwork.org
Email: [email protected]
 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