Clinical Services

People with ALS do best with coordinated care for the wide range of needs they develop over the course of their disease. Research has shown that people with ALS who are treated at a multidisciplinary clinic live longer and have a better quality of life than those who are not. At the multidisciplinary ALS clinic at the University of Miami, we provide the full range of clinical services for ALS patients through all stages of the disease.

Our team members include (full descriptions below):
Neurologist
Nurse/Nurse Practitioner
Speech and Swallowing Pathologist
Nutritionist
Physical Therapist
Occupational Therapist
Respiratory Therapist
Psychologist
Social Worker

 

Neurologist

The neurologist oversees the entire team in the clinic. He or she makes the initial diagnosis and discusses it with the patient and family. The neurologist will discuss what to expect in the future (the prognosis), as well as available treatments. During your regular visits, the neurologist assesses your functional abilities and general condition, and discusses symptomatic therapies that are appropriate to consider as the disease progresses. The neurologist may also discuss enrolling in a clinical trial, should an appropriate one be available, as well as other opportunities to participate in research. Making decisions at each new stage of the disease can be challenging. The neurologist is there to help you and your family understand the issues involved and to reach the best decision for you at each stage.

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Nurse/Nurse Practitioner

The nurse and the nurse practitioner play many different roles for patients and their families. At the time of diagnosis, they are on hand to provide support, understanding, and education about ALS, working with you in a positive way to begin the process of adjusting to the diagnosis and planning for the future. They also provide information about the multidisciplinary clinic, arrange your first follow-up visit to the clinic, and serve as the liaison among the team members. Nurses or nurse practitioners also coordinate referrals for community or in-home services, when that is appropriate.

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Speech and Swallowing Pathologist

ALS affects the muscles that control speaking and swallowing. The speech and swallowing pathologist assesses the degree of impairment in both speech and swallowing at various times during the disease course, and develops a treatment plan to minimize disability and maximize function and safety. He or she will also introduce you to options for augmented and assistive communication (AAC) devices, secretion management, a PEG feeding tube, voice banking, and other strategies for maintaining quality of life and compensating for diminished function.

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Nutritionist

Good nutrition and hydration are important for everyone, but in ALS there are special challenges. The nutritionist performs a nutritional assessment, evaluates problems that may interfere with food and liquid intake, advises on diet modifications and eating strategies, and provides information on avoidance of constipation. The nutritionist will also work with the speech and swallowing pathologist to make recommendations about the timing and utility of a PEG feeding tube.

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Physical Therapist

The physical therapist evaluates you regularly throughout the disease course, determining functional abilities and developing and modifying a plan of care. The PT provides advice on exercise, how to prevent fatigue, and how to avoid complications such as falls, pressure sores (from sitting too long in one position) and joint contractures (stiffening). He or she also provides advice and expertise on the use of splints, braces, wheelchairs, and other assistive devices that help enhance mobility and maximize the quality of life.

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Occupational Therapist

The occupational therapist evaluates your abilities in activities of daily living (ADLs), such as dressing, feeding, and toileting, and provides advice and equipment for maintaining function and compensating for lost function. The OT often works with the family to develop at-home modifications to promote both independence and safety in the home.

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Respiratory Therapist

Breathing becomes impaired at some point in the ALS disease process. The respiratory therapist evaluates your respiratory muscle strength and function, and monitors these important variables regularly as the disease progresses. He or she also provides training in good airway hygiene, and counsels you on the use of adaptive techniques such as "breath stacking." The respiratory therapist introduces you to the availability of non-invasive ventilation measures, as well as a cough-assist device, since a strong cough is essential for preventing airway infection.

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Psychologist

Living with ALS is likely to bring with it psychological challenges for both you and your caregivers. Psychological counseling is an important part of the overall treatment plan. The psychologist evaluates mood and behavior, provides counseling, and offers advice regarding how to approach discussions with other members of the family and with friends. Young children within the affected family often have special psychological needs, and counselors can help the family understand these, and work with the child to remain feeling secure during the course of the disease.

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Social Worker

Coping with ALS is challenging on both emotional and practical levels. Finding the support you need for coping with those challenges is often a significant challenge by itself. The social worker's job is to help you obtain that support. He or she provides information about, and referrals to, community agencies for counseling, in-home care, and other important options. The social worker also helps you and your family to navigate insurance, disability, family medical leave, and other important issues related to finances and employment. The social worker will also discuss advance directive documents for medical decision-making, and assist with end-of-life care planning, including palliative and hospice care.

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