Managing Multiple Sclerosis
Many people with multiple sclerosis find dealing with fatigue to be an important aspect of managing the disease and preventing further attacks. An occupational therapist can work with you, your family and your employer to put strategies in place that will help you to maximize your energy. These strategies will be geared to preserve energy for those activities that you feel are the most important to you.
As balance and coordination, along with short-memory and concentration can also be affected from time to time, an occupational therapist can assist you to find solutions to these symptoms as well.
By finding ways to manage MS, you may find you have more energy and feel more in control of your life, and able to cope with the ups and downs of unpredictable and recurring attacks.
Try these occupational therapy strategies…
1. Schedule your work hours to accommodate your energy rather than pushing yourself. Consider the mental and physical demands of your work. Can the heavier demands be spaced throughout the day or week to prevent exhaustion? Maintain an agenda for one month to keep track of your work and home demands. Review of a planning system can help you learn your limits. Assess what tasks you can realistically do and what needs to be discontinued.
2. Consider "the fit" of your work environment for you. Awkward and repetitive movements contribute to muscle fatigue. Reduce the awkward postures and movements used to accomplish your work tasks. Ensure that the items you use most frequently are within comfortable reach. For example in a computer office environment, a trackball may be easier to use than a mouse. An ergonomic consultation from an occupational therapist can assist in modifying the work environment and work tasks to suit your abilities.
3. Fatigue may make full-time work impossible. Is part-time work or modified work an option? An occupational therapist can work with you to educate the employer about MS, removal of barriers, and possible workplace modifications.
At home or in the community…
1. Spreading personal care activities throughout the week can help conserve energy. Bathing and hair washing can be exhausting. Try scheduling these two or three times a week and remember to bathe in luke warm water. Hot water can quickly drain your energy.
2. Small bathroom renovations can help you with poor balance and
coordination. To continue bathing independently but safely, many people with MS have proper grab bars installed in their bathtub, and use a bath seat with good rubber footings. The same bars can be installed beside the toilet.
3. Assistive devices can help you remain independent. Tools like long-handled shoe horns, reachers, and dressing sticks will make it easier when you feel weak or when your balance is off. Organize your bathroom and closet areas so you can reach items easily. Do the same in the kitchen - consider pull-out shelves; install these just below waist height or at horizontal reach. Use lightweight dishes and pans, and for those larger, heavier items use a trolley to move them from the counter to table.
4. Plan your daily activities. If memory becomes a problem, use a daytimer to schedule everything you have to do. It will not only help you remember things to do but also prevent you from over doing it on any one day. Try planning your hardest or necessary tasks for times when you have the most energy and save the easier tasks for your less energetic times. Make time for those activities you really enjoy — leisure is important too!
5. Use mobility aids. Occupational therapists can help you find the right ones. Canes, walkers, wheelchairs and scooters may be warranted.
Finally, your needs will change. Occupational therapists can assist you in reassessing your strategies so you may keep as independent as possible.
Quick Facts about Multiple Sclerosis from the MS Society of Canada
- Canada is considered a high risk area for MS.
- An estimated 50,000 Canadians have MS.
- Almost twice as many women have MS than men.
- MS often strikes young adults between the ages of 20 and 40 who are in their career and family building years.
- MS symptoms are variable and may include blurred vision, extreme fatigue, loss of balance, problems with co-ordination, speech or short-term memory, muscle stiffness, bowel and bladder problems, and partial or complete paralysis.
Longbloed, Lyn. (1998). The experiences of women with multiple sclerosis. Canadian Journal of Occupational Therapy, 65,193-201.
This paper examines the experiences of unemployed women with multiple sclerosis with three income support programmes, the Canada/Quebec Pension Plan, long term disability insurance and social assistance. Findings are based on ethnographic interviews with 23 women. Difficulties experienced with these programmes include the low level of benefits of two of the programmes, the earnings-based component of two of the programmes, and requirements in eligibility criteria that applicants be defined as permanently unemployable. The occupational consequences of disability income policies are mediated by marital and socio-economic status. For some, policies mean lives of poverty and marginalization, for others they mean lack of freedom to change jobs, to work part-time or hesitance to return to the work force. The ways in which social policies shape the individual experience of disability should inform occupational therapy intervention at the individual level. Therapists are also challenged to help create policy environments that will enhance client function.
For the full paper in Acrobat PDF format, download msjongbloed98.pdf
Finlayson, M., Winkler Impey, M., Nicolle, C., & Edwards, J. (1998). Self-care, productivity and leisure limitations of people with multiple sclerosis in Manitoba. Canadian Journal of Occupational Therapy, 65, 299-308.
As part of the activities of the Social Action Committee of the Multiple Sclerosis Society (Manitoba Division), a large mail-out survey was conducted in the spring of 1995. The purpose of the survey was to gather demographic, health, social and financial information from members who have multiple sclerosis to support various government lobbying efforts and to plan individual and family services. The response rate for the 720 surveys sent was 65%. This paper presents descriptive analysis exploring the occupational performance limitations experienced by the survey respondents based on the Model of Occupational Performance (CAOT, 1991). The prevalence of limitation was found to vary by specific occupation, by type of multiple sclerosis, by area of occupational performance, but not by fatigue status. The study findings have assessment and intervention implications for occupational therapists who work with people with multiple sclerosis in both institutional and community settings.
For the full paper in Acrobat PDF format, download finlayson.pdf
Other source of information
In addition to funding important research, the MS Society provides support and consultation for people with MS, family members, caregivers and health care professionals. Helpful booklets include: Solving Cognitive Problems, Someone You Know Has Multiple Sclerosis: A Book for Families, and Taming Stress in Multiple Sclerosis. For more information call 1-800-268-7582 or visit their web site at www.mssoc.ca
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