A MORE COMPREHENSIVE approach to treatment grew out of the recognition of the complexity and chronicity of the problems caused by MS, as well as its impact on the entire family. The effects of MS are not only medical, but also social, economic, and emotional. The idea of a solitary medical practitioner working to find a cure or manage all the problems no longer seemed feasible. Rather, the far-reaching impact of the disease required the intervention of a multidisciplinary team, working in a coordinated fashion to help the patient and family cope with the ongoing stresses of MS.
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| What Are The Treatments For Multiple Sclerosis |
MS centers that provide this type of comprehensive care for patients and their families have emerged in the United States and Canada over the past 30 years. In addition to the physician, this type of team might include a nurse, physical therapist, occupational therapist, speech-language pathologist, psychologist, social worker, recreational therapist, and nutritionist. Although the members of the team each tend to focus on different aspects of patient and family care, they share the important goals of education, disease management, and support.
Although individual healthcare practitioners have tended in the past to be reactive, responding only to losses and negative events, the role of the healthcare team in MS is a proactive one. As soon as the diagnosis is known, the team begins to educate the patient about ways to slow disease progression, manage the symptoms and prevent unnecessary complications. Thus, for example, the person who has MS (and family members) will learn the indication for a specific treatment, the expected result, and the possible side effects. Realistic expectations for a treatment form the foundation for its success, as well as the success of the doctor-patient relationship.
In addition, the team begins to help the entire family with the coping and adjustment process. During these early months, team members assess the family's existing strengths and resources. The family's ability to cope with the stresses of chronic disease will depend on the internal and external resources they bring to bear on the problem. The healthcare team helps patients and families recognize, appreciate, and utilize all their existing strengths to cope with the challenges that arise.
Families also need to learn about resources available in the community. What is helpful for one family may not be helpful for another, but the goal is to provide a menu of options so that families can choose what is most useful for them. The educational process needs to be ongoing in order to meet the changing needs within the family. Information that would have been irrelevant to a family in the early stages of the disease may suddenly take on new meaning as significant medical, economic, or social changes occur.
The family clearly has a central role in this comprehensive model of MS care. The family experiences its own reactions to the diagnosis of MS in one of its members. From the outset, family members are encouraged to express their own sadness and anger over this intrusion into family life. They will be unable to support the patient in any effective way over the course of the illness if they are overwhelmed by their own reactions.
The healthcare team can help families assimilate MS into their lives without allowing personal and family needs to be totally submerged by the disease. Family members are encouraged to pursue personal goals and maintain satisfying outside interests and activities so as not to feel like hostages to MS. Spouses and elderly parents, in particular, can experience guilt over their own good health and their feelings toward the family member who has MS.
The healthcare team can lessen this guilt by supporting people's efforts to maintain an independent life beyond the MS. This, in turn, will have reciprocal benefits for the team and the person with MS. Over the course of the illness, family members serve as a valuable extension of the healthcare team. To the extent that they continue to feel good about themselves and satisfied with their own lives, family members can be more effective in their care of the person with MS.
This, in turn, helps promote the long-range goal of the healthcare team, which is to promote quality care for individuals with MS, free of unnecessary hospitalizations or treatments, and free of the threat of premature or inappropriate long-term placement.
While the comprehensive, multi-disciplinary team approach to MS care is ideal, it is not always available, especially outside of large cities. Your National MS Society chapter, which can be reached by calling 800-FIGHT-MS (800-344-4867), can refer you to an MS center or to MS-specialist clinicians in your area. The challenge is to find ways to access this multi-disciplinary expertise even if you cannot find it within a single center. There are two primary strategies for accomplishing this:
The first strategy is to locate the MS center that is nearest to you, and consider the possibility of using their expertise on a consultative basis. There are many people with MS who visit a comprehensive center once every year or two for a thorough evaluation and recommendations on treatment. The center then forwards its recommendations back to the person's local physician for implementation. While some physicians might resent the input from the MS center doctors, there are many that find this type of collaboration very helpful, particularly since it may not be possible for them to keep up with all of the latest research and information about available treatments.
The second option is to create your own team of specialists and ask them to communicate with one another about your care. In other words, you make every effort to ensure that your family doctor, neurologist, urologist, physical therapist, and whatever other specialist you might use, know what care you are receiving. Some people accomplish this by asking each practitioner to send reports to the other practitioners; other people maintain a file of their own records, including a complete list of all their medications, and bring them to each doctor's visit. Since the MS nurse is often the person who is most familiar with you and your care needs, she or he may be in an ideal position to help you coordinate your care. The goal of these efforts is to ensure that the various aspects of your medical care are working in some coordinated fashion to help you manage the challenges of MS. To find out more, you can check out What Are The Treatments For Multiple Sclerosis.