The ALS Medical Team

Living with ALS is a challenge for patients and their families, however, we think that there are ways to make living with ALS easier. One way is by developing a team of specialists in the field of ALS to help meet the challenge. The team is made up of physicians and allied health professionals who work together to meet the needs of patients and families living with ALS. Fields represented on the Team include: neurology, gastroenterology, otolaryngology, physical therapy, occupational therapy, speech pathology, augmentative communication, psychology, social services, nursing, respiratory therapy, and dietary. They work to streamline the referral process; share information with other agencies and healthcare personnel; communicate and work with primary care physicians, case managers, and insurance companies to ensure comprehensive care; research treatments and procedures to find the best options for treating the symptoms of ALS; and participate in drug trials and research.

Description of ALS Medical Team Specialties

Neurologist - The initial role of the neurologist is the medical evaluation of the patient and diagnosis or confirmation of diagnosis. Subsequently the neurologist becomes the key ALS team contact and monitors clinical function, initiates treatment programs as needed, and provides overall support to the patient and family. Information is provided regarding the latest developments in ALS research and the patient is offered the opportunity to participate in clinical research trials if specific entry criteria are met

Nurse - A nurse coordinator is the main contact between the different ALS team members and the patients and their families. The nurse also provides a multitude of services, including monitoring of vital signs and weight, maintaining the medical records for each clinic visit, assessing general health problems and providing practical solutions, and testing functional changes in the patient's clinical status. In addition, research nurses coordinate the different clinical drug studies for patients attending the clinic.

Pulmonologist - The role of the pulmonologist is to carefully evaluate respiratory status and initiate prompt intervention to treat respiratory dysfunction when needed. This includes monitoring respiratory function and capacity and the corresponding blood oxygen and carbon dioxide levels. This may include a cessation of smoking program, instruction in maintaining nutrition and prevention of aspiration, flu and pneumonia vaccinations, introduction of respiratory support (bipap or ventilation) and medications to decrease the work of breathing. If oral secretions become excessive, drugs that decrease saliva production or suction devices to remove secretions may also be prescribed.

Respiratory Therapist - The role of the respiratory therapist is to obtain measurements of respiratory function and instruct the ALS patient and family in the use of therapeutic measures such as breathing exercises and assistive coughing and in the use of equipment prescribed by the pulmonologist.

Physical Therapist - The role of the physical therapist is to assist the patient in the areas of exercise, equipment, and safety. This includes patient and caregiver instruction in stretching and range of motion exercises to help maintain flexibility and reduce cramping. The physical therapist may also recommends devices and equipment such as an ankle-foot-orthosis, a cane, a wheelchair, a neck brace to help in maintaining mobility and independence. Instruction in proper methods for moving, transferring and lifting patients and recommendations for safety equipment including aids for transfers, lifts, grab bars and shower chairs is also provided. The goal is to promote the highest level of possible function, for as long as possible while avoiding fatigue.

Occupational Therapist - The role of the occupational therapist is to provide the ALS patient with options, resources, and information for maintaining independence in activities of daily living. The occupational therapist assesses the patient's functional abilities (range of motion, muscle strength, daily activity levels, mobility) and performance in activity areas such as dressing, feeding, hygiene, and in the work environment. Adaptive devices such as rocker knives, button hooks, handwriting aids, book holders, zipper pulls, key holders, reachers and grab bars may be recommended to assist weakened muscles, reduce fatigue, promote safety, and enhance life quality

Speech Pathologist - The role of the speech/pathologist is to assess the ALS patients speech and communication skills, implement strategies to enhance communication, provide patient/family and assure that ALS patients can express their feelings, thoughts, and needs. If there is muscle weakness in the lips, tongue, or palate, the patient may not be able to move their mouth precisely or fast enough which results in slurred speech. Instruction in the use of compensatory strategies (such as slowing the rate of speech, separating the syllables, and over-enunciating the speech sounds) can be helpful. These strategies can also be augmented by communication devices such as magic writing slates, alphabet boards, picture boards, eye scanning boards, electronic devices with voice output, and even high-tech computerized devices.

Social Worker - The role of the social worker is to assess the impact of recent physical, emotional, and financial changes in the patient with ALS and how the patient and family are coping. Current and future needs are addressed, as well as the personal and community resources that may be available to help meet those needs.

Psychologist - The role of the psychologist is to assess and address coping strategies, signs of depression, maladaptive means of coping, communication style, quality of relationships and the nature of family dynamics. A diagnosis of ALS changes everything not only for the patient, but for family and friends. The goal the psychologist is not to change people, but to meet them where they are in the adaptation process, provide a supportive relationship and assist them in finding internal resources to help in coping with ALS. Successful coping strategies include the ability to articulate needs and wants, the willingness to share feelings with others, the ability to be a good listener, and the openness to look at new ways of communicating with loved ones and health professionals.

Dietitian - The role of the dietitian is to devise an individual program to provide adequate nutrients in the context of the patient's swallowing ability. ALS may cause weakness of the muscles involved in chewing and swallowing which can result in coughing and choking episodes. The objective is to provide adequate nutrients while preventing aspiration of food or liquids into the lungs which could lead to infection and pneumonia. This is typically accomplished by modifying the consistency and texture of foods and liquids or by recommending the use of alternative feeding methods.

Gastroenterologist - The role of the gastroenterologist (an expert in the stomach, intestines and colon) is to provide support of the ALS patient regarding problems associated with the digestive system. This specialist is typically consulted as swallowing problems result in the need to consider a feeding tube.

Otolaryngologist - The role of the otolaryngologist (an ear, nose and throat expert) is to help manage problems with swallowing, drooling, aspiration, and speech. This specialist is typically consulted as problems result in the need to consider a tracheostomy.