Understanding The Unique Aspects And Challenges Of Living With MS

Transcription

1 Connecticut Resident Services Coordinator Training Understanding The Unique Aspects And Challenges Of Living With MS July 23, 2009 Susan Raimondo, Senior Director, Advocacy & Programs National Multiple Sclerosis Society Connecticut Chapter Sponsored by UConn Health Center Center on Aging CT Dept of Economic & Community Development

2 Our Goal Increase your understanding of multiple sclerosis Highlight hidden and frequently misunderstood aspects of MS Help you feel more comfortable when working with individuals living with MS.

3 What is MS? Neurological Disease Misguided Immune Cells Multiple Scars to Myelin and Nerves Unpredictable Often Progressive

4 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 Loretta a 47yo white single woman who moved into a nursing home because she can no longer care for herself Maria a 10yo Hispanic girl who falls down a lot and whose parents just told her she has MS

5 What causes MS? Genetic Predisposition Environmental Trigger Autoimmunity Loss of myelin & nerve fiber

6 Who gets MS? Usually diagnosed between age 20 and ,000+ Americans with MS 2.5 million people worldwide More common in women than men (2-3:1) 10,000 + children in US have MS. Most common in those of Northern European ancestry More common in temperate areas of the world

7 What are possible symptoms? Fatigue (most common) Bladder/bowel dysfunction Sensory problems (numbness, tingling) Emotional changes (depression, mood swings) Walking difficulties* Thinking/memory problems Vision problems Stiffness (spasticity)* Pain (neurogenic) Sexual problems Speech/swallowing problems* Tremor* Breathing difficulties Dizziness/vertigo *visible to others

8 In other words What other people SEE may only be the tip of the iceberg.

9 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

10 Types of MS Relapsing-Remitting MS (RRMS) ~ 85% Secondary-Progressive MS (SPMS) 50% of individuals diagnosed with Relapsing/Remitting MS are later identified as having Secondary Progressive MS. Primary-Progressive MS (approx 10%) Progressive-Relapsing MS (approx 5%)

11 Strategies for MS Treatment Treat relapses Manage the disease course Treat symptoms Maintain and improve function Enhance quality of life Early treatment is very important

12 Working with residents living with multiple sclerosis

13 Unique aspects of MS Chronic- ongoing Unpredictability Loss of Choice and Control Mysterious symptoms

14 MS Fatigue 75-95% of people with MS suffer from severe fatigue For many it is most disabling aspect of MS Occurs even after a restful sleep Worsens as the day progresses Aggravated by heat and humidity Comes on easily and suddenly

15 Temperature sensitivity When a person s body temperature goes up, MS symptoms get worse. Air conditioning can be a medical necessity Caution with the temperature of baths and food/drink. Fevers may cause symptoms to increase In a matter of a few hours as a fever rises, a person who can usually walk may become a quadriplegic.

16 Emotional and Cognitive Changes in MS

17 Depression in MS: What Do We Know? Depression is under-diagnosed and undertreated in MS. 50+% experience a major depressive episode at some point over the course of the disease. Best treatment for depression: Psychotherapy + Medication (+ Exercise) Suicide is 7.5x more common in MS than in general population (Sadovnick et al., 1991).

18 Other Emotional Changes Anxiety, Fear, Anger Neurologic and/or reactive: Mood swings Pathological laughing and/or crying aka Involuntary Emotional Expression Disorder Euphoria

19 50-60% of people with MS experience cognitive problems Cognitive Functions Commonly Affected Memory - acquisition and retrieval Attention & concentration - working memory Speed of information processing Executive Functioning Visual/spatial organization Verbal fluency - word finding

20 Cognitive Functions Rarely Affected in MS General intellect Long-term (remote) memory Recognition memory Conversational skill Reading comprehension

21 Impact of Cognitive Changes The ability to think, remember, and reason is central to a person s identity. Changes in cognitive abilities: Threaten the sense of self Damage self-esteem and self-confidence Cognitive abilities form the basis of our interactions with others. Cognitive impairments: Alter communication patterns Impact other people s perceptions Interfere with role performance Affect the balance in a partnership

22 RSCs can help reassure someone with MS and cognitive impairment That it s OK to do things a little differently than in the past. Although abilities may not improve, function can be enhanced. Compensation is key e.g., many memory problems can be solved with better organization. Consistency is essential. Stick with your program and follow through with your new strategies. Keep the mind active and stimulated.

23 Hints include helping a resident to Organize environment so regularly used items are in familiar places. Develop a consistent daily routine. Schedule activities according to fatigue level, plan activities requiring more mental effort earlier in the day. Conduct conversations in quiet places to avoid distractions.

24 Hints include helping a resident to Keep a calendar/notebook of important information. Repeat information, write down important points. Follow verbal instructions with written directions and visual aids. Introduce change slowly, one step at a time.

25 Emotional & Family Issues On-going Losses Depression/ Painful Emotions Cognitive Impairment Striving for Independence Family Concerns Financial Stress High unemployment rates of people with MS Many living on fixed incomes

26 Emotional & Family Issues, cont. Communication Trust and Intimacy Planning/problem-solving Conflict/tension Disruption of family rhythms

27 All This Can Add Up To Constant ebb and flow of emotions Feeling of walking on eggshells Additional stress Reactions are unpredictable and can change throughout the day

28 A Word about Abuse and Neglect Abuse/neglect of people with MS is common. Regardless of age, race, gender, socioeconomics Perpetrated by family and paid caregivers Forms of abuse include: physical, emotional, neglect, and economic abuse.

29 Abuse and Neglect, cont. Contributory factors Lack of support services Substance abuse by caregiver Caregiver stress Non-MS-related issues Abuse/neglect often go unreported Fear of retaliation and/or abandonment

30 What can people with MS 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.

31 Suggestions for Coping Information Communication Effective planning for today/ tomorrow/future Shared problemsolving

32 So what do we know about MS? Chronic unpredictable disease, affects each differently Cause is still unknown Not fatal, contagious, directly inherited, or always disabling Symptoms vary widely and may be hidden & misunderstood Look out for fatigue, cognitive challenges and depression Early diagnosis and treatment are important Treatment includes: relapse management, symptom management, disease modification, rehab, emotional support Maintaining optimal wellness is crucial

33 What You Can Do Be knowledgeable of MS and its symptoms Be sensitive to the losses and sadness that people with MS experience Understand the variability of the disease Understand that people with MS want to be as independent as they possibly can Contact the National MS Society for information, resources, and support

34 The National MS Society Information and referral for health professionals, families people with MS and researchers. Direct financial assistance (crisis, respite, home/vehicle modifications, equipment, medical transportation) Educational programs (including newly-dx) Wellness, family & recreational programs Self help groups Advocacy Professional consultations legal, employment, long-term care, health insurance Largest private funder of MS research.

35 Questions about local services National Multiple Sclerosis Society Connecticut Chapter 659 Tower Avenue, First Floor Hartford, CT Phone: , Fax: