2 An exacerbation is like an acute illness superimposed on a chronic one
3 An exacerbation is always a “crisis” Worsens old symptoms or produces new onesInvolves a choice to treat or notDisrupts the status quoProduces a ripple effect for the individual & familyElicits strong emotions in all concernedNormal grievingAnxietyAngerGuiltHas an uncertain outcome
4 Implications for daily life Major life activities are interrupted.Cognitive changes may appear or worsen during an exacerbation, even early in the disease.People are greater risk for depression during exacerbations, even early in the disease.Corticosteroids can affect mood and cognition.The individual may be called upon to make decisions when least able to.
5 Not all exacerbations are alike Clinically-isolated syndromeFirst clinical attack with confirmed diagnosisSecond clinical attackSubsequent attacks
6 Clinically-isolated syndrome Has more meaning for the clinician than the patientMRI findings vs. symptomsPoses difficult treatment choicesInitiating treatment begins the adaptation processRedefining the self and the familyAcknowledging uncertainty and unpredictabilityDeclining treatment increases future riskFamily members may not be in agreement
7 First clinical event with confirmation of dx Diagnosis is confirmed but most symptoms remit“I can beat this if I just try hard enough!”“I’ll be the lucky one.”“It was probably nothing.”“The doctor has made a mistake.”“I don’t need to start treatment yet.”Although this kind of denial can be very adaptive at the moment of crisis, it may interfere with a person’s ability to make appropriate treatment decisions and sets the person up for feelings of guilt and failure when the disease progresses.
8 Denial is aided and abetted by family, friends, and colleagues “I’m so glad you’re better.”“You look just like your old self again.”“We knew you could beat this.”“You couldn’t possible have MS.”“Why would you want to start taking shots?”These comments reflect people’s need to reassure themselves as much as the person with MS.
9 The second exacerbation can be devastating “I guess I really do have MS.”“I guess the doctor was right after all.”“I’m going to end up in a wheelchair.”“Life will never be the same.”“No one will want me.”“There go my dreams for….”People begin to acknowledge the end of life as they knew it and the beginning of life with a chronic disease.
10 Searching for an explanation of the unexplainable Taking blame“I must have done something really bad to deserve this.”“I guess I didn’t try hard enough.”“I wasn’t strong enough to fight this.”“I must have too much stress in my life.”Mommy—did I make you sicker?”Being blamed“What did you do/not do to make this happen to you?”“This is God’s plan for me.”There is a tendency for people to blame themselves and/or be blamed by others; the need for education is paramount.
11 Starting a disease-modifying therapy Starting treatment = admitting the diagnosisInjecting a medication is a frequent reminder of disease, but doesn’t make the person feel better or promise a positive outcomeAn individual never really knows whether the medication is workingDisease-modifying therapies are expensiveFamily members still may not be in agreement.
12 Other exacerbations thereafter Struggling to feel control over the unpredictableWaiting to see “what will be taken away next”Making difficult decisions about treatmentChange doctorsAlter disease-modifying therapy: switch, combine, discontinueTurn to miracle “cures”Facing difficult lifestyle decisions/re-defining self, control, independenceMaking accommodations/using adaptive devicesMaking changes at home and workFamily members still may not be in agreement
13 Reactions of People with MS and Their Family Members Anxiety—common reaction to unpredictability and loss of controlAnger—common reaction to unpredictability and loss of controlGuilt—relating to “not pulling one’s own weight” and to angry feelings that have no acceptable outletGrief—normal reaction to change and lossEach in his/her own way, and in his/her own time—challenging family communication and shared problem-solving
14 Emotional Impact on the family CouplesCommunicationImpacted by emotional issues, coping styles, cognitive sxIntimacyImpacted by caregiving activities/role changes, sexual dysfunctionShared-problem solvingImpacted by communication issues, cognitive sx, depressionCommunication, intimacy, and shared problem-solving are threatened just when they are most needed
15 Impact on the family, cont’d ChildrenConcerns about sx/hospitalizations/medicationsEasy targets for parents’ emotional overloadIncreased responsibilitiesParentsAnxiety over adult children’s self-care
16 “The Very Nervous System” In a small study of children who have a parent with MS, a common response to the question “How can you tell a person has MS?” was “It makes mom very cranky.” Here’s one child’s depiction.
17 Recommended interventions Provide education about disease activity/progressionScreen for depression; cognition dysfunctionDiscuss treatment plan: short-, long-termProvide emotional supportHelp patients mobilize resourcesEncourage effective planning/problem-solving
18 National MS Society Resources for Patients My Life, My MS, My Decisions (www.nationalMSsocidty.org/mylifemymsmydecisions). Online classes to help people boost their decision-making power.Teaming Up with Your Healthcare ProvidersNavigating the Medication MazeConsidering Clinical TrialsAchieving Optimal WellnessKnowledge is Power A free, at-home, six-part educational series for people newly diagnosed with MS