What Kind of Topics Could Be Discussed at an MS Support Group for Family Members?
Multiple sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord. Scar tissue builds up in the central nervous system, causing loss of muscle control, vision and balance issues as well as numbness. This diagnosis affects everyone in the family in some way. Support groups help family members understand what their loved one with MS is going through and offer an outlet and resource for their own concerns and questions.-
The Disease
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How much a person with MS chooses to tell his family about his disease is a personal decision. Because some sufferers don't feel comfortable discussing the disease, covering the causes, symptoms and anticipated progress of MS is invaluable in a family support group. Discussing treatment options and potential prognoses offers new perspectives and information.
Communication
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Disease can make communication difficult. Members of a support group, as well as the moderator, offer guidance in how to approach certain subjects with an MS patient. Family members need to learn how to share their feelings and needs while respecting the privacy and emotions of their loved one. Learning to be tolerant and understanding when the patient does not want to talk is difficult, but crucial. Some people may need assistance broaching the subject with younger children. Support groups are also vital resources for understanding what questions to ask doctors and other health care professionals.
Expectations
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As MS advances, changes will occur in the home. In addition to the level of assistance the person may need, physical alterations to the home may be required. Wheelchair ramps, accessible bathrooms and hospital beds may be needed. If the family believes they will be unable to provide the care necessary, they should consider the option of assisted living or nursing homes.
Family Dynamic
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No matter the type of family, relationships within the structure are bound to change with a diagnosis of MS. For a couple, the patient's partner may feel an increased financial and emotional burden. When young children are involved, a host of questions and issues arise, including what to tell them, how their care may change and new responsibilities that may be placed on them. Keeping the loved one with MS involved in family activities is important, even if it means a change to routines. Other families in the support group may be the best resource for these topics.
Practical Considerations
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The practical and logistical concerns can be overwhelming. From the health care costs to the prospect of a lost income, financial considerations often cause anxiety for families dealing with MS. Increased daily stress is normal when disease strikes a family and ways to deal with this are essential. Families faced with MS should also be aware of the Americans with Disabilities Act and their rights under it.
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