Comprehensive care of primary-progressive multiple sclerosis (PPMS) involves the expertise of many different health care professionals. Each of these experts contributes in a unique way to the management of the disease and the symptoms it can cause. Sometimes this team of professionals works within a single center, offering one-stop shopping for people with MS. More often, however, people are referred by their physician to other specialists in the community as the need arises. In either case, the ultimate goal is comprehensive, coordinated care that is designed to manage the disease, and promote function, independence, and health and wellness.
The neurologist functions as the leader of the team. As a specialist in diseases of the nervous system, it is the neurologist’s job to make the diagnosis of primary-progressive MS, identify treatment strategies—to manage the disease course and any symptoms that may occur—and coordinate these treatment efforts with other members of the health care team.
Here you can meet the other members of the PPMS care team—the nurse, rehabilitation specialists including the physiatrist, physical therapist, occupational therapist, and speech/language pathologist, mental health specialists, including the psychologist and neuropsychologist, social worker, and dietician, among others.
This web page was developed through an educational grant from Genentech and Biogen Idec.
The nurse is a vital member of the PPMS care team, often acting as the glue that holds it all together. While the nurse's role will differ from one setting to another, primary nursing activities include educating people with MS and their families about the disease and supporting people's efforts to initiate and maintain a comprehensive treatment regimen. The nurse also helps people coordinate the care they need, maintain their overall health and wellness, and access the critical programs and services for which they are eligible.
The nutritionist or dietician provides information about the role of diet in managing the symptoms of primary-progressive MS and guidance about how to plan and prepare healthy, enjoyable meals. Although there is no particular food or dietary supplement that can control or cure MS, a balanced, high-fiber, low-fat diet can promote wellness, reduce fatigue and constipation, and help with weight management issues. The nutritionist also works with the rehabilitation specialists to help people who develop swallowing difficulties.
The physiatrist is a physician with expertise in physical medication and rehabilitation. As the leader of the rehabilitation team, the physiatrist designs a treatment plan that is designed to help a person with primary-progressive MS function at the highest level possible given whatever limitations he or she may have. The treatment involves exercise of various kinds, any assistive devices that may be needed to promote mobility and safety, and medications. From the time of diagnosis onward, the physiatrist’s goal is to ensure the highest possible quality of life for each individual.
The physical therapist (PT) works with people with primary-progressive MS to enhance function and mobility in everyday life. Using a treatment plan that takes into account a person’s abilities and limitations, home and work environments, and social support system, the PT develops an exercise program to improve strength, coordination, and balance, teaches the appropriate use of mobility aids, as needed, and recommends fatigue management strategies. The PT has a critical role to play throughout the disease course, beginning at the time of diagnosis.
The occupational therapist (OT) supports the efforts of people with primary-progressive MS to remain productive, safe, and independent in their home and work environments. Using exercises for the upper body, adaptive equipment, home and work space modifications, and work simplification strategies, the OT helps people with PPMS to conserve energy, function effectively, and enhance their equality of life. OTs also offer tools and strategies to deal with low vision problems, cognitive issues, and symptoms that interfere with driving.
The speech/language pathologist (S/LP) has several important roles in the care of people with primary-progressive MS. In addition to evaluating and treating problems with speech production or clarity that can interfere with effective communication, the S/LP evaluates swallowing problems and works with the nutritionist and physical therapist to ensure safe and healthful eating. And many S/LPs also evaluate changes in cognitive abilities and recommend compensatory strategies to help people with PPMS function effectively at home and at work.
The psychologist has a key role in helping people with primary-progressive MS learn about the disease and adapt to its presence in their life. In the privacy of the therapist’s office, people can deal with their feelings of loss and anxiety, learn effective coping strategies, and think through major decisions around treatment, disclosure, and important relationships. Psychologists evaluate and treat mood changes that may occur, such as mood swings or depression, and many also diagnose and treat MS-related cognitive changes.
The neuropsychologist specializes in the evaluation and treatment of cognitive changes, including problems with memory, attention, and problem-solving. The neuropsychologist evaluates cognition using a battery of tests designed to identify the person’s abilities and limitations, and uses that information to teach compensatory strategies that optimize the person’s ability to carry out activities at home and at work. Information from the evaluation can also be used to support disability applications if and when the need arises.
The social worker helps people with primary-progressive MS and their family members to connect to essential community resources related to employment, home modifications, disability applications, long-term care, or any other services they might need. In many settings the social worker also provides counseling services, helping people with PPMS navigate their way through the stresses and challenges associated with a progressive disease course. The social worker may also serve as a liaison with other members of the health care team.
The primary care physician is an essential adjunct to the PPMS care team. While the specialists are focusing on the person’s primary-progressive MS, the primary care doctor—generally a family physician or internist—is monitoring the overall health and wellness of the person with MS and his or her family members. In addition to screening for common problems such as high blood pressure or diabetes, which can easily be overshadowed by the symptoms of PPMS, the primary care physician also helps to coordinate the care provided by all of the specialists.