Patient Care | ALS Center

Capable and Compassionate Clinical Services

All of your ALS healthcare specialists in one cutting-edge center

Our multi-disciplinary team of ALS specialists work together to seamlessly and compassionately coordinate care, while our research team provides opportunities to learn about, and to participate in research.

Diagnostic Evaluation

The diagnosis of ALS can sometimes be challenging, especially since there are no blood, radiological or other diagnostic tests. Instead, the diagnosis requires the clinical judgement of an experienced neurologist with expertise in ALS and related disorders. Key to making a correct and timely diagnosis, is the combination of a careful medical history, a thorough neurological examination, electromyography (EMG) and the judicious use of other tests to rule out ALS mimics. The Neuromuscular Division at the University of Miami has several neurologists skilled in the evaluation and diagnosis of patients who may have ALS. These ALS specialists bring their expertise and compassion to the evaluation of patients in whom the diagnosis of ALS is being considered.

Fast Track ALS Clinic

Recognizing the critical importance of a timely diagnosis, to help minimize anxiety and to initiate treatment as early as possible, the ALS Center has established a Fast Track ALS Clinic for the evaluation of people who are suspected to have ALS or require a second opinion. Our goal is to ensure that the evaluation will occur within two weeks of our learning of the need for an appointment.

Second Visit Clinic

Hearing the news that one has been diagnosed with ALS is a life-changing event that raises a myriad of questions, many of which arise only after leaving the physician’s office. Patients and their families need swift answers to these questions. This led us to conceive the idea of a ‘Second Visit Clinic’, occurring within 7-10 days of receiving a diagnosis of ALS. This gives patients and their families a little time to begin to come to terms with the diagnosis, and then to quickly return to see our experts who will answer questions, begin to put in place a management plan, to explore the potential value of genetic testing, and to discuss research opportunities. An added benefit of the ‘Second Visit Clinic’ is that it ensures that newly diagnosed patients never leave the ALS Center without a concrete plan for early follow-up. Moreover, the structure of the ‘Second Visit Clinic’ ensures the initial diagnostic evaluation can focus on establishing and communicating the diagnosis, and to providing comfort to patients and their families.

Multi-disciplinary Care

The multi-disciplinary clinic aims to coordinate services to help manage the needs of patients throughout the course of disease. These clinic visits take 3-4 hours, enabling our patients to see all their providers in a coordinated and efficient manner. Rather than moving from room to room, each patient stays in an examination room, with the providers rotating through for their appointments. Every patient also meets with a member of the research team to learn about research opportunities and ongoing clinical trials, both locally and nationally. The care team then meets at the end of the clinic to develop a comprehensive and integrated plan that is customized to the needs of each individual patient. Following each clinic visit, we work together as a healthcare team to procure necessary medical devices and obtain insurance approvals for prescribed medications.

Augmentative and Alternative Communication (AAC) Clinic

When ALS causes weakness in the muscles of the tongue, face and throat, speech may become slurred. As weakness progresses, speech may become sufficiently impaired to interfere with verbal communication. Communication with others is critically important in expressing our opinions, wishes, needs and emotions, and loss of the ability to communicate may lead to social frustration, social isolation and depression. To provide optimal communication support to our patients, we have established an AAC clinic, where patients’ speech is evaluated and individualized communication tools, ranging from simple devices to very sophisticated technologies, are offered.

Wheelchair Clinic

If muscle weakness progresses to the point that ambulation is no longer safe, then a wheelchair may be needed. A custom-designed wheelchair is paramount to maintaining independence and comfort in patients who are immobilized. Our wheelchair clinic is staffed by a physical therapist and a healthcare provider who perform a thorough evaluation and tailor the chair to the specific needs of each individual.

Qalsody Clinic

Qalsody is a type of gene therapy, approved for the treatment of SOD1 ALS by the US Food and Drug Administration in April 2023. The Qalsody clinic, established and led by Dr. Carberry, is dedicated to providing this transformative medication to patients with SOD1 ALS. Qalsody is administered as an infusion into the spinal fluid and requires special expertise to deliver as well as to prevent and mange side effects that might arise. This clinic builds on the extensive shared experiences with the medication between Drs. Carberry and Benatar, who leads the ongoing clinical trial of Qalsody in the pre-symptomatic population at elevated genetic risk for SOD1 ALS.

The Importance of Multi-disciplinary Care

For people diagnosed with ALS the physical, emotional, social, spiritual, and financial challenges can often become overwhelming. The progression of the disease brings new symptoms and difficulties. This increases the number of people involved in the critical care of the patient and their families.

A multi-disciplinary approach provides many advantages including the sharing of information, collaboration and holistic decision making. Clear communication among the care team and the effective coordination of required services is vital. The support of a team of connected specialists can provide exceptional peace of mind and an informed understanding for the patient and their families. Interconnected services greatly improve the continuum of care along the journey.

Today, the best ALS care is provided by multi-disciplinary teams. There is strong data that patients who are cared for by these teams experience significantly prolonged survival and a better quality of life. Further, medical complications appear to occur less frequently in the setting of multi-disciplinary ALS care. Various national ALS Care guidelines, including that of The American Academy of Neurology, state that multi-disciplinary care should be considered for all patients.

Coordinated Care for Changing Needs

Our team of ALS specialists provide a wide range of treatments and services for patients and their families. Our services are coordinated to treat the evolving needs of the patient throughout the progression of the disease.

A multi-disciplinary ALS Clinic employs various health care professionals from a range of disciplines who work together to optimize care for patients and their families. Neurologists, physical therapists, occupational therapists, speech therapists, respiratory therapists, clinical psychologists, dietitians, social workers, and nursing care managers have important roles in addressing various aspects of the disease.

During a typical clinic visit, patients are seen by all these specialists, decreasing the burden of time and travel. Members of the care team meet after every clinic session, sharing their opinion and recommendations about each specific patient. This ensures a well-coordinated plan of action for all aspects of care.

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.

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 multi-disciplinary 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.

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.

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.

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.

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.

Mental Health Professional

Living with ALS is likely to bring 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.

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.

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.

Meet Our Experts

The UM ALS team of exceptional clinicians and researchers.

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Research Holds The Key

Comprehensive research is the pathway to understand and eventually cure this complex disease.

Multi-disciplinary Care is Essential