Download Cultural Considerations: Multiple Sclerosis

Cultural Considerations:
Multiple Sclerosis
THINGS TO CONSIDER WHEN TREATING THIS POPULATION
DEFINING THE DISEASE
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Multiple Sclerosis (MS) is a neurodegenerative disease that affects the central
nervous system (Brain and Spinal Cord).
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An inflammatory process demyelinates nerves, causing problems with
conduction of nerve signals.
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MS is a chronic condition, and there is no known cure. Medications and
treatments aim to reduce symptoms, inhibit further degeneration, and modify
the course of the disease.
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MS can come in two forms: Progressive and Relapsing, with combinations of
both in some people. Symptoms can vary daily.
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MS affects more women than men, with over 2.5 million people globally and
400,00 people in the U.S. affected by this condition.
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This disease usually presents itself between the ages of 20 to 40.
Physical Considerations
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Fatigue: Is it secondary to disease or primary? Is fatigue because of poor sleep
patterns, depression, or lack of physical exercise? Some medications used to
treat narcolepsy have been shown to decrease fatigue in MS patients. Use
pace, work simplification, energy conservation to help with functional tasks.
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Pain and MS: Weakened muscles can cause knee/hip/back pain due to
altered posture. Pain can be anywhere, and may be a primary or secondary
condition. Pain can be reduced with medications, physical therapy(
stretching/massage), and relaxation techniques (meditation/yoga). For
muscle problems, physiotherapy, exercise for flexibility/strength, and AD/AE
such as walking sticks, crutches or wheelchairs.
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MS Triggers: Heat, stress, and fatigue. MS Hug is a common symptom of pain in
the intercostal muscles that can feel like pressure on the ribcage, slow burning
pain, or sharp pain.
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http://www.healthline.com/health/multiple-sclerosis/would-understand
Cultural Considerations
Web Interviews
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Do not be afraid of touch with these clients. Many MS patients may seem fragile, but they
are not. They do not appreciate when touch is not maintained due to fear or ignorance.
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Many of these patients feel isolated. Do all you can to treat them as you would any other
person, and let them know that they are not alone.

Do not hesitate to discuss problems relating to sexual dysfunction/relationships/toileting
and incontinence. Communication and instruction on these topics are often avoided
due to social taboos. MS patients can benefit from your knowledge in areas that are not
commonly approached.

Do not be afraid to offer physical assistance. Clients with early onset may be resistive to
help, but more advanced patients will appreciate physical assistance.

We are not drunk, despite the appearance that we might be. Get to know us instead of
just assuming.
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Get to know the signs and symptoms of depression. This secondary/tertiary symptom can
be more debilitating than the actual disease.
Cultural Considerations:
Interview
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Acceptance of the condition can be hard. People with MS may look at others who do not have the
disease and wonder why they are not grateful for their own health. Socialization with others who have
the condition can help alleviate stress and depression. Socialization with friends/peers can be difficult
(do not want to be an object of sympathy).

Most people who have MS will have a secondary condition; be aware when treating them. Each day
will be different, some days can be good, and others can be bad. Always offer hope.

Loss of work/insurance can instill feelings of guilt and anxiety. Depression is a common feeling early in
the disease process. Monetary concerns are imperative: how much can you make before your
disability stops you from working.

Empathy and support are critical. Each individual will be affected differently, but everyone experiences
a decreased pace with activities and decreased endurance as the disease progresses.

Cognitive changes to short term memory. Sensations will almost always be lessened peripherally or in a
number of primary or secondary senses.

Live in the moment, and try not to worry too much about future problems. Living today while you have
the capacity, and not worrying about future your condition.
Cultural Considerations
Web Blogs
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Stress can be more upsetting to an individual with MS than to a normal person because it
can cause relapse. Help to keep stress levels low. Any tricks to help alleviate stress will be
beneficial to us.

Communication is key with our population. Find ways to talk to us about everyday normal
events. Discuss medical topics in an open and frank manner. People often do not
communicate directly to us, but rather to a caregiver. This can be demeaning and
insulting to a patient with MS.
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Exercise is important to us. Just because we may have a physical handicap does not
mean that there are no physical activities for us. Find alternatives or compensatory
strategies. Exercise can help to keep us healthy and in remission states.
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Good IADL strategies for healthy meals can help. This population often lacks the energy
to cook, so finding quick and healthy alternatives is welcomed.
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Our families are our greatest resource. Help them to understand our condition, and to be
able to learn various techniques for helping us cope with this condition.
Cultural Considerations
National MS Society
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Mobility is key to this population. Because of the decreased capacity to drive, mobility is a
primary concern for people who have MS. Some will resist (once I sit in a scooter I will
never walk again), while family members may be apprehensive (he/she can still walk and
do not need assistance).
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Accessibility at home is also very important. This population may require adaptive
equipment to bathe, toilet, cook, or get around their home. Use techniques of energy
conservation/work simplification to help around the house.
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Alternative treatments can help this population. Take an open minded approach when
treating this condition. Many non medical treatments have provided relief from
symptoms.
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Grief is common. Help people with MS to understand their loss, and to move on with a
purpose and meaning.
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Medications can cause other side effects. Be aware of what these might be when
treating this condition. Lability, nausea, and fatigue are common side effects that may
not be primary symptoms.
Cultural Summary
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Depression and isolation are almost always present.
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Touch is important to this population: you will not hurt them by touching.
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I am an individual with a condition, treat me appropriately.
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I am not drunk, stupid, or on drugs.
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My family is my best support, help them to help me.
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Do not be afraid to communicate, even on touchy subjects.
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Help me to overcome my grief of physical loss.
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I may live in the moment due to fear. My fears are real. Help me to live each day as if it were my best.
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Help me to be mobile, healthy, and de-stressed. This can help my condition.
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Socialization with others, especially friends, can be hard. Help me to stay social with my peers and friends.
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I will try anything to decrease my symptoms. Please keep an open mind to non-traditional or alternative treatments.
Things to consider during treatment:
Cognitive Issues

Cognitive symptoms have no correlation to the physical manifestations of the
disease, meaning that even individuals with mild symptoms physically may be
affected cognitively and also that people with severe physical symptoms may
show no adverse cognitive effect. Cognitive dysfunction is more likely with
progressive MS. Being in relapse is a risk factor for cognitive dysfunction.
Cognitive changes are more likely to progress once they have started, albeit
slowly, and are unlikely to remit.
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First signs of cognitive impairment in MS: trouble remembering routines at work
or home, difficulty finding words in conversation, poor judgment, and difficulty
keeping up with tasks or conversations. Cognitive rehabilitation can include
computer mediated memory exercises and compensatory strategies such as:
notebooks, computers, and filing systems. OT/ST or Neuropsychologists can
help to administer cognitive tests to determine function.
Symptoms of MS
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Vision: Vision is one of the most commonly affected senses. Diplopia, blurriness,
pain, and problems with contrast are common, affecting one or both eyes.
Most cases are mild, although permanent damage may result in rare cases.
Steroids are used to treat these symptoms.
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Arm/Leg muscles: The feeling of pins and needles due to primary symptoms is
the most common symptom of these muscles. Fine motor control and
coordination are affected initially. As the condition progresses, more muscle
involvement decreases limb control, gait, and balance. Eventually, adaptive
equipment such as canes, walkers, and wheelchairs can help with mobility.
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Nervous System: Demyelination can cause vertigo, dizziness, memory
problems, and emotional or personality changes. Depression can be a
secondary or primary symptom. Rare or advanced stages can cause tremors,
seizures, and cognitive issues that resemble dementia.
Things to consider during treatment:
Cognitive Symptoms
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Cognitive changes are common in patients with MS. Approximately 50% of
all MS patients will experience some type of cognitive problem. Certain
functions are more likely to be affected: Memory, attention (especially
divided attention), information processing (primary senses), executive
functions, visuo-spatial functions, and verbal fluency.

Certain cognitive functions are more likely to remain intact: long term
memory, general intellect, reading comprehension, and conversational
skill. Only 5-10% of people with MS develop severe enough symptoms to
impact daily function significantly.
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http://www.youtube.com/embed/9uKYOpN4pyA
Physical Considerations
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Immune System: Most physicians and researchers believe that MS is an immune-mediated
disease. Symptoms may flare up during times of immune system activation such as
sickness. Medications that suppress the immune system may regulate relapses, but also
put the patient at risk for increased infection.
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Bones: Poor muscle strength decreases the ability to stand and bear weight, causing
bones to lose density. Steroid use also can decrease bone density. As a secondary
symptom, this can be dangerous due to the increased risk of falls presented by this
population.
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Speech/Swallowing/Breathing: According to the National Multiple Sclerosis Society, 40%
of people with MS develop speech problems. Symptoms are: slurring, poor articulation,
and volume control. These often occur during relapses or times of fatigue. This is a primary
symptom due to nerve demyelination. Swallowing difficulties are less common, but can
have more serious repercussions. Breathing difficulty is also rare and dangerous, but can
be attenuated by working with respiratory therapy.
Physical considerations
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Bladder/Bowel control: Frequent urge for urination and lack of control of
(dribbling/incomplete emptying) are very common with MS patients. Drink
plenty of water to decrease chances of UTI, use continence aids, time
consumption, bladder exercises, and limiting caffeine/alcohol can limit
these symptoms. Catheters may be used to treat UTI due to incomplete
emptying. Antibiotics can also help. Limiting intake can increase risk of
infection (natural consequence due to incontinence). Constipation is also
a common symptom. Eat fiber, drink lots of H2O, and physical activity limit
constipation. Medications can contribute to this problem, and also limit
the symptoms.
Treatments: Medications & Therapy
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DMARDS: Disease modifying medications aim to prevent or reduce the
severity of attacks, slow the progression of the disease, or to prevent
further disability.
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Examples: Interferon Beta 1a/1b, dimethyl fumarate, teriflunomide,
mitoxantrone, and natalizumab.
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Corticosteroids used commonly to treat inflammation.
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Popular alternative treatments: bilberry leaf, ginger, vitamin D
supplements, co-enzyme Q10, massage, and biofeedback.
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Therapies: Physical Therapy, Occupational Therapy, Speech Therapy,
Vocational Rehab, and Cognitive Rehab.
Pharmaceutical Side Effects &
Tertiary Symptoms
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Corticosteroids have been shown to affect mood lability, increased
energy levels, euphoria, mood depression, and manic/depressive
behaviour. Mania exhibits more prevalently than depression. Psychotic
symptoms including hallucinations may occur. Side effects of IFN 1a./1b
can include flu like symptoms and anemia. No side effects have been
reported with natalizumab or mitoxantrone.

Tertiary Symptoms: Depression, job loss, isolation, and relationship issues.
Summary
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Important things to consider: MS can run the spectrum from mild to severe,
with various degrees in between. The disease is chronic, with no known
cure, and the symptoms can vary with various stages of relapse and
remittance. Certain triggers can cause relapses: heat, stress, or infection.
MS affects every patient differently, but symptoms can be primary or
secondary. Most patients will show symptoms of pain, fatigue, muscle
spasticity or weakness, sensory complications, and bladder and bowel
discontinuity. This is a chronic condition that can be treated medically and
physically, and most people live long and productive lives. Tertiary
symptoms can include job loss, depression, isolation, and relationship
issues.
References:
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http://www.nationalmssociety.org/
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http://www.healthline.com/health/multiple-sclerosis/would-understand
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http://www.healthline.com
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http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosismaintaining-intimacy?ctr=wnl-mls-021513_ld-stry_1&mb=
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http://www.healthcentral.com/multiple-sclerosis/c/general/livingwith/social-issues
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Personal interview with J.J., friend and MS survivor.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1279282/