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2011
Christine
Stefanovic
RN
The Multiple Sclerosis Self
Management Workshop
1
The Multiple Sclerosis
Self-Management Workshop
2
Write down a positive statement about yourself and what
you would like to learn about managing your MS.
3
Notes:
4
Introduction to Self-management
Self-management of chronic diseases has been proven to benefit patients,
by providing knowledge and skills needed to maintain and promote
beneficial health behaviors (NIH, 2006).
Medical Management- Administering and taking medications,
adhering to diet, using medical devices appropriately
Role Management-“… maintaining, changing and creating new
meaningful behaviors or life roles” (Lorig et al 2003p.1).
Emotional Management- effectively coping with depression, anger,
fears, frustration and mood swings (Lorig et al. 2003).
5
MS SELF-MANAGEMENT
WORKSHOP CONTRACT
To have the best results from this workshop I agree to:
Bring a support person.
Attend all classes.
Arrive on time.
Participate in class activities.
Do the homework assignments to the best of my abilities.
Contract with myself:
_____________________________________.
6
COMMUNICATION
1. Before doctor’s appointment write down the topic
to be discussed during your visit.
2. List all areas that you are concerned about.
3. Possible treatments that you would prefer?
Medication, PT, OT…
4. Advocate for yourself or bring someone who will!
4. Before the end of your appointment re-address or
clarify the issues discussed.
7
Ways to self-manage medications:
1. Establishing habits-
2. Adjusting routines-
3. Tracking-
4. Simplifying-
5. Valuing medication
6. Collaborating to manage- ask the care provider about side effects,
cost, and benefits before starting a medication to be informed.
8
A Few MS Internet Sites
1. http://www.nationalmssociety.org/index.aspx
2. http://www.nlm.nih.gov/medlineplus/multiplesclerosis.html
3. http://www.iomsn.org/slidepresentations.htm
4. http://www.mscare.org/cmsc/index.php
5. http://www4.va.gov/ms/
6. http://nccam.nih.gov/health/whatiscam/overview.htm
7. http://www.msassociation.org
8. http://www.ms-cam.org
9. http://www.brighamandwomens.org/patient/microMS.aspx
10. http://www.cnpp.usda.gov/Publications/DietaryGuidelines/2005/200
5DGPolicyDocument.pdf
9
STRESS-MANAGEMENT
What makes you stressed?
What are some stressors at work?
What are some stressors at home?
10
HOME WORK:
KEEP A RECORD OF STRESSORS
Who, what and where?
Record your reactions to stress/ thoughts during stress and after.
What are your responses to stress? (Physical and emotional)
Rate the stressors from mild to severe (1 to 5)
Reflect on which stress management techniques can be effective for
your stressors
11
Stress Management Techniques
1. Meditation
2. Relaxation techniques
3. Yoga
4. T’ai chi
5. Aerobic exercise
6. Music
7. Art
8. Visualization
9. Having fun: plan activities to look forward to
10. Communicate with others, esp. to the person causing stress.
11. Reduce unnecessary stressors
12. Provide enough time to complete activities
13. Ask for help
14. Don’t over schedule
15. Stop being a perfectionist
16. Conserve energy- know your limits, avoid doing too much in one day.
17. Get organized- home/work filing system, calendar, or electronic device
(PDA).
18. Avoid saying “I should”, prioritize and do.
19. Respect others coping mechanism. What works for others might not work
for you and vice versa
20. Cognitive Therapy in the treatment of pain and emotions (Thomas et al.,
2006) modifying dysfunctional thinking, behavior, and emotional
responses and breaking the cycle of negative talk
21. (http://healthlibrary.epnet.com/GetContent.aspx?token=0d429707-b7e1-
4147-9947-abca6797a602&chunkiid=101930)
12
Notes:
13
Keep a record of daily stress.
List the different stressors.
Rate it on a scale of 1 to 5 (mild to severe)
Sun Mon Tues Wed Thurs Fri Sat
14
EXERCISE
Exercise is beneficial to people with MS
What types of exercise are participants presently doing?
What are the barriers to exercising for you related to MS?
Problems with exercise for MS, heat intolerance, fatigue, and
physical limitations, could exacerbate muscle spasms (Must
consult a health professional before starting any exercise program).
15
The Benefits of Exercise for people with MS
Improve Bowel and bladder function (Harris & Halper,
2008).
Reduce obesity
Increases muscle strength, for better mobility ( walking,
balance)
Can Improve activity for daily living (arm strength)
Can Improve fatigue
Can Improve depression, improves mood (Reitberg et al,
2009)
Can reduce muscle wasting
Can reduce the risk of other illnesses (diabetes, heart
disease...)
Can improve Quality of Life! (Stuifbergen, et al, 2006;
Motl, et al, 2008; Motl et al, 2009; Thomas et al, 2009).
16
Notes:
17
Quality of Life
Quality of life (QOL) can be defined as wellbeing, and life
satisfaction. It is a multidimensional concept that is
individualized, adaptive and changing throughout one’s life.
The definition of QOL addresses physical, psychological,
spiritual, social connectedness, goals, hopes, and aspirations.
QOL can be both subjective and objective (Plummer &
Molzahn, 2009; Quality of Life Concepts n.d.; Costello, &
Harper, 2004).
18
Quality of Life
It is what you want out of life to make it enjoyable
Make a list of your goals for quality of life…
1.
2.
3.
4.
5.
19
EXERCISE HOMEWORK
1. Write down an exercise program that you would be interested
in participating in.
2. Select a realistic goal of; time of day, minutes of exercise,
and frequency per week.
3. Share with class. Place in booklet.
4. Put in communication list for healthcare provider.
20
Note:
21
Diet/ Complimentary and Alternative
Therapies (CAM)
22
1. No specific diet has been shown to reduce the progression of MS
(Farinotti et al., 2007).
2. A healthy diet is important to prevent illnesses and other chronic
disease, such as heart disease and diabetes, thus reducing
complications of MS.
3. A balanced diet can reduce obesity that can cause stress on joints and
diminish mobility.
4. A healthy diet prevents weight loss that may lead to skin breakdown,
while promoting health (Halper, 2007).
5. Vitamin D is presently being evaluated as an immune modulator to
prevent MS and treat exacerbations (Correale, Ysrraelit, & Gaita’n,
2009; Soilu-Hänninen, M., Laaksonen, M., Laitinen, I. et al, 2007; ).
6. There is some evidence that a diet low in saturated fats and
supplemented by Omega 3 (from fatty fishes, cod-liver oil, or flaxseed
oil) and Omega 6 (fatty acids from sunflower or safflower seed oil and
possibly evening primrose oil) may have some benefit for people with
MS. (http://www.nationalmssociety.org/living-with-multiple-
sclerosis/healthy-living/nutirtion-and-diet/index.aspx)
7. Good fluid intake, a balanced diet, sufficient physical exercise,
scheduled bowel routine and moderate use of medications (laxatives
and bulking agents) can reduce constipation and fecal incontinence
(Coggrave M,Wiesel P, Norton CC.Management of faecal
incontinence and constipation in adults with central neurological
diseases. Cochrane Database of Systematic Reviews 2006, Issue 2.
Art. No.: CD002115. DOI: 10.1002/14651858.CD002115.pub3.)
8. CAM: Most common- reflexology, massage, yoga, relaxation and
meditation, acupuncture and aromatherapy. Massage therapy,
acupuncture, and other complimentary treatments are considered
useful treatments, but no conclusive studies were found (Rocky
Mountain MS, 2010; National Center for Complementary and
Alternative National Institute of Health, 2007; US Department of
Veterans Affair MS Center for Excellence, n.d.).
23
The most important aspect of CAM is
what is safe for you, and does it make
you feel better.
Make a list of CAM therapy that might benefit
you!
1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
24
DIET/CAM Homework:
Write about a healthy meal you planned and what you can do to
improve your diet, reduce fat, appropriate portion size, increase
fruits and vegetables. Journal about any plans you have started
with an exercise program (join a gym, walk daily, light hand
weights…)
25
Managing Fatigue
Definition of Fatigue:
“A subjective lack of physical and/or mental energy that is
perceived by the individual or caregiver to interfere with usual and
desired activities” (Fatigue and multiple sclerosis Evidence based
management strategies of fatigue in multiple sclerosis, 1998).
26
What is fatigue to you?
What time of day are you most fatigued?
What activities make you fatigued?
Is it chronic (on-going) or acute (new, just developed)?
Are you sleeping at night?
Communicate fatigue to your doctor.
List ways to improve fatigue:
1.
2.
3.
4.
5.
27
Everything you have learned in this workshop can
help you manage fatigue!
28