1. Understanding Multiple Sclerosis
National Multiple Sclerosis Society Pacific South Coast Chapter La Place Court, Ste. 200 Carlsbad, CA FIGHT-MS

2. A resource for clients, families, and health care providers.
Society Overview
Founded in Pacific South Coast Chapter includes San Diego, Orange and Imperial Counties.
Our goal: to help those living with multiple sclerosis lead healthier, happier lives.
A resource for clients, families, and health care providers.

3. What is MS?
Multiple sclerosis is a chronic disease of the central nervous system (CNS) that interferes with the brain’s ability to send and receive messages.
MS is thought to be an autoimmune disease.
Nerves in the brain and spinal cord are covered with a fatty, protective covering called myelin. Myelin functions like an insulating cover on an electric wire, sending electrical impulses to and from the brain.
INTRODUCTION
Encourage participants to share any experiences they might have had
See if they can identify any particular issues or challenges related to the disease

4. What is MS? The body’s own defense system attacks the myelin.
Damaged myelin may form scar tissue (sclerosis).
Sometimes the nerve fibers are severed.
Very unpredictable neurological disease- 400,000 in US
A lot we still don’t understand about the disease
Thought to be an autoimmune disease ( immune system attacks part of the body)
Misguided immune cells, instead of attacking bacteria, viruses, and other invaders of the body system, attack the body itself
With MS, they attack the protective myelin surrounding nerve fibers in central nervous system. ( Brain and spinal cord)
Can also damage the fibers themselves (electric cord analogy)
These inflammatory attacks cause scarring at multiple sites—multiple scars (MS)
There can be some repair of the damaged myelin, ( we have cells in our body that produce myelin) but damage is often faster than restoration. Nerve damage is irreversible
Damage causes the symptoms. Messages from the brain to the body
and back get lost or distorted
Randomness of the disease is greatest challenge..”I never know what will visit me in the night”- said a young man with MS
Variability- unable to be predicted; People with MS are all different-
A person with MS can vary in what they can do day to day, hour to hour
Often progressive, either initially, or later- Very scary

5. Who Gets MS?
In the U.S. It is estimated that there are about 400,000 people with MS.
MS is more common in women than men.
MS is most frequently diagnosed between the ages of
MS is less common in equatorial climates than in cold climates.
MS is neither contagious nor fatal.
Corticosteroids are used to reduce the inflammation from exacerbations more quickly
WORK TO SLOW PROGRESSION & REDUCE THE FREQUENCY & SEVERITY OF CLINICAL ATTACKS
DMTs- Avonex, Betaseron, Copaxone, Rebif (modulate the immune system)
Novantrone (suppresse the immune system)-Four times a year by IV infusion in a medical facility.Lifetime cumalative dose limit of approx doses over 2-3 years
For treatment of worsening relapsing-remitting MS, progressive-relapsing or secondary – progressive MS
Symptom Management- Many treatments available to address the symptoms of MS
Medication
Self-Care techniques- Heat management
Rehabilitation- Physical therapy, OT, ST
Exercises-Yoga, aqua therapy
Assistive Devices

6. Common Symptoms Fatigue Weakness Numbness and tingling
Stiffness (spasticity)
Tremors
Difficulty walking
Visual problems
Speech problems
Swallowing problems
Dizziness and vertigo
Pain
Bladder, bowel, and sexual problems
Cognitive issues
Depression
This cartoon 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.

7. How is MS Diagnosed? There is no definitive diagnostic test for MS.
The nature of MS makes diagnosis difficult. Symptoms often come and go.
A physician, usually a neurologist, makes a diagnosis based on the description of symptoms along with findings from the neurological exam and MRI’s.
Relapsing/remitting-Clearly defined flare-ups followed by complete/partial recovery (remission) (85% initially R/R)

8. What Causes MS? The exact cause of MS is still unknown.
It is believed that both environmental and hereditary factors are involved in the development of MS, however; these specific factors have not yet been identified.
Relapsing/remitting-Clearly defined flare-ups (85% initially R/R)
Secondary Progressive- Initially R/R, followed by steady worsening (50% R/R)
Primary Progressive- Continuous worsening from onset (10%)
Progressive Relapsing- Steady worsening, but flare-ups too (5%)

9. Types of MS Relapsing-remitting – periods where symptoms come and go.
Primary-progressive – no clear exacerbations and remissions, just slow worsening of symptoms.
Secondary-progressive – begins as RR, but with incomplete recovery after each exacerbation.
Progressive-relapsing – continued deterioration from the time of diagnosis, with relapses.
HEAT & STRESS CAN TEMPORARILY WORSEN SYMPTOMS
Fatigue- Overwhelming lack of physical and/or mental energy; variable
Spasticity- Muscle stiffness,tightness; involuntary contractions; variable
Balance- Standing/ walking balance, or seating balance; safety concern-USE OF EQUIPMENT
Visual Impairment-Rarely total blindness;double vision,clouding,jerking eye movements
Bowel- Constipation more common-decreased activity, meds, MS involvement
Bladder- Urgency & incontinence, or hesitancy & retention; high risk of UTIs
that have serious implications for MS and require immediate attention
Tremor- Involuntary shaking; more pronounced when reaching
Weakness- Can affect upper body strength, transfers; can also impact respiratory muscles, resulting in inadequate breathing & coughing
Numbness- Lack of sensation; skin integrity an issue, risk of pressure ulcers; may be no awareness of injury
Pain- Tingling, burning; stabbing facial pain; postural problems
Swallowing-May be tendency to choke;need time/concentration when eating
Speech- Ranges-mild slurring/ volume/ lack of speech
Paralysis- Loss of voluntary functioning-may not be able to shift weight
Depression- Disease process as well as reaction to it-very prevalent
Cognition-Intellect usually intact; May be memory, judgment, attention, wordfinding difficulty
NOTE THAT MANY OF THESE SYMPTOMS ARE INVISIBLE

10. Relapsing-Remitting MS
Increasing disability
Relapsing/remitting-Clearly defined flare-ups followed by complete/partial recovery (remission) (85% initially R/R)
Time

11. Secondary-Progressive MS
Increasing disability
Secondary Progressive- Initially R/R, followed by steady worsening with or without occasional flare-ups, minor recoveries, plateaus. (50% R/R)
Time

12. Primary-Progressive MS
Increasing disability
Primary Progressive- Continuous worsening from onset, no distinct relapses or remissions (10%)
Time

13. Progressive-Relapsing MS
Increasing disability
Progressive Relapsing- Relatively rare, Steady worsening from onset, but with clear attacks and worsening neurologic function(5%)
Time

14. How is MS Managed? Maintaining good health habits Physical therapy
Occupational therapy
Speech therapy
Counseling
Medication
On-going losses- Physical, family life, imagined life as a healthy individual,
work life, community life, recreational activities, independence
Stuck with anger that has no end
Depression- More prevalent in MS than in other neurological disorders-May be reactive/may be associated with MS disease process if damage occurs in area of brain that controls emotion/May be side effect of medications
Emotions- Fear, guilt, frustration, grief, anxiety, desperation-
Since disease changes all the time, emotional work is never done
Cognitive Issues-( Not Dementia). Usually alert and oriented
Short-term memory, judgment, organizational abilities, attention span may be impaired
Correlates to lesion load but not level of disability
Self-report may not be accurate
Striving for Independence- Usually of sound mind; want to direct their care
They will fight for the highest level of independence they can maintain
They will push to do things they can’t do- want normalcy, dignity
Since they have had to become increasingly dependent on aides and
other assistance, they take pride in managing and controlling the situation as much as possible- can at times be difficult for staff
Family Concerns- MS is family disease. Different,maybe conflicting, coping styles
Drain on family resources- time, money, energy
May be children, elderly parents in the picture

15. Treatments to Slow the Progression of MS
While there is currently no cure, there are seven
different treatments options for people with MS:
- Avonex (Interferon beta 1a)
- Betaseron (Interferon beta 1b)
- Copaxone (Glatiramer acetate)
- Extavia (Interferon beta 1b)
- Novantrone (Mitoxantrone)
- Rebif (Interferon beta 1a)
- Tysabri (Natalizumab)
Chapters in 50 states across the country FIGHT-MS
Briefly introduce local chapter
Visibility of MS Walk and MS Bike- raise $ for programs and research
Education & support programs for people with MS and their families
Professional Education- enhances quality of care; access to care
Research- Society has spent more than $460 million on MS research-
Find the cure
Find a way to prevent the disease
Improve symptom management
Improve quality of life
Advocacy- Local advocacy; Public policy office in Washington

16. 2009 Community Survey General Nearly 25% living near poverty levels
Nearly 70% dealing with physical disability or walking limitations
Insurance
Nearly 15% declined insurance because of their MS diagnosis
Private insurance 69.4%, Medicare 32.5%, MediCal 11.9%
Family Support
75% living with family, 18.5% living alone
64.6% concerned about relying on family or friends for help in the future
Housing
60.4% concerned about being able to live independently in own home
Nearly 24% needed help with home modifications in the
past year
Total of 6,541 people responded to the survey—22.6% response rate.

17. Financial Challenges
Annual cost of MS for the year 2007 $70,000/person
Only 20-30% of people with MS are still in the workforce after 15 years
Disease modifying drugs can cost $3000/month
Our Programs
Financial Assistance Program
Financial Planning Program
Durable Medical Equipment (DME)
Chore Service, transportation
Based on Society-funded study results, the annual cost of MS for the year 2007 was at nearly $70,000 per person. The major components of the cost include lost wages ($26,671) and health care ($38,866).

18. Advocacy Policy Priorities—Federal
Increased MS research
Congressionally Directed Medical Research Programs (CDMRP)
National Multiple Sclerosis Disease Registry
Health care reform
Health care reform principles
Affordable Access to Prescription Medications Act of 2009
Disability rights
Access to quality health care
Long-term care resources
Lifespan Respite Care
Accessible, affordable insurance
Eliminate the 24-month Medicare Disability Waiting Period
Congressional Multiple Sclerosis Caucus

19. Advocacy Policy Priorities—State
Ensure that drug manufacturers are held accountable to MS-CAN sponsored bill (SB 486) on safe needle disposal.
Sponsor legislation to provide greater disclosure of the drug pricing system and to address out of pocket prescription costs.
Initiate legislation that would require insurers to provide coverage for Durable Medical Equipment (DME).

20. Client Programs and Services
Education and Information
Information for those newly diagnosed, referrals and seminars
Emotional Support Services
Support groups, counseling and professionally-led groups
Wellness Programs
Aquatics, yoga, strength training and more
Family Support Programs
Relationship Matters, family fun days, caregiver programs, family respite care, Angel Visitation

21. JOIN THE MOVEMENT
How can you help the National MS Society support people with MS?
Referral list
Advocate
Volunteer
Donate

22. 1-800- 344-4867 www.mspacific.org www.nationalmssociety.org
CONTACT US