The MDA Team
The Barrow MDA Clinic uses a multidisciplinary team approach to provide comprehensive evaluation, diagnosis, monitoring, and management of ALS and neuromuscular disorders with the goal of improving the quality of life for patients and their families. The multidisciplinary team includes neurologists, physical and respiratory therapists, speech and language pathologists, dietitians, social workers, a clinic coordinator, and an MDA health care services coordinator. The MDA Clinic team also collaborates with gastroenterologists, cardiologists, orthopedists, hospice, and the Arizona State University Department of Speech and Hearing Sciences to facilitate comprehensive patient care.
Neurology
Neurologists evaluate patients' neurological function and symptoms to establish a diagnosis; to monitor disease status; and to prescribe neurological testing, treatment, or therapy. Patients see a neurologist for an initial evaluation and then for follow-up evaluations as needed.
Genetic Counseling
Genetic counselors assess the patient's
medical history and family history and oversee the appropriate
genetic testing to determine the mode of inheritance of the
patient's disease and to provide genetic counseling and
support. Genetic counselors also determine if other family
members would benefit from genetic testing. They educate
patients about genetic inheritance, provide information about the
disease progression, and discuss current treatments. They may
also offer supportive counseling to families, serve as a patient
advocate, and refer individuals and families to community or state
support services. Genetic counselors participate in clinical
research projects to further the understanding of the causes of
neuromuscular diseases.
A genetic counselor is available to discuss current knowledge of
genetic neuromuscular conditions and genetic tests with patients
and their extended family members who may be at risk.
Please go to our Resources page to find links to websites with information on genetic counseling, genetic testing, and clinical trials.
MDA Clinic Coordinator
The MDA coordinator oversees clinic operations by scheduling appointments, scheduling tests and procedures, and obtaining insurance authorization for treatment. The coordinator helps by assessing patients' needs by phone, and by answering questions, and by providing information on community resources for recreation and support services.
Occupational Therapy
Occupational therapists teach patients new strategies for coping with activities of daily living (ADL) so that they may become as independent as possible. Occupational therapists may also recommend adaptive equipment, assist with finding vendors for equipment, and provide education for patients and their caregivers.
Physical Therapy
The role of physical therapista is to provide
information and resources to help patients improve or maintain
function at home and at work. They assist with gait analysis,
make recommendations for orthotics, assess equipment needs, and
provide education for patients and caregivers. They also
facilitate referrals to outpatient clinics and home health care
providers.
When providing information about exercise, durable medical
equipment, orthotics, and modifications for the workplace and home,
physical therapists consider patients' present level of function as
well as their future loss of function..
Neuromuscular disorders affect each person differently so physical
therapists develop individualized treatment plans to guide patients
and their family. Physical therapists support caregivers
and encourag them to take care of themselves so that they can
continue to care and support the patient.
Speech and Language Pathology
The role of speech and language pathologists in the treatment of neuromuscular diseases, such as ALS and myotonic muscular dystrophy (MMD), is to assist with the management of speech and swallowing impairments. Speech and language pathologists may also make recommendations for and assist with acquisition of augmentative or alternative communication (AAC) devices.
Swallowing: Neuromuscular disorders may affect muscles in the jaw, tongue, lip, and back of tongue that control chewing and swallowing. These changes may result in drooling (poor saliva management), trouble chewing, and difficulty swallowing. Patients may be unable to form a food bolus, may have difficulty moving food to the back of the mouth, and may experience difficulty initiating their swallow. These problems can result in coughing, choking episodes, and/or loss of liquids through the nose. When managing swallowing difficulties, the two main goals of speech and language pathologists are to prevent aspiration and to maintain adequate levels of nutrition and hydration with the least amount of restriction. Recommendations provided by speech and language pathologists may include modification of swallowing habits, diet modification, techniques to prevent the aspiration of food and/or liquids into the lungs, and alternative feeding methods when swallowing and food modifications are inadequate to prevent aspiration and to maintain adequate nutrition and hydration.
Speech/Communication: When muscles used to produce speech are affected, patients may experience speech slurring, slowed speaking rate, reduced voice loudness, and difficulty being understood. For these problems speech and language pathologists may provide patients and families with education about their disorder and how it may specifically affect their communication in activities of daily living. They also may assess speech and communication skills and communication needs, provide instruction for compensatory strategies to maintain natural speech for as long as possible, and make appropriate referrals for an augmentative or alternative communication evaluation (also called a speech-generating device) if patients lose their ability to use speech for functional communication in daily living.
Respiratory Therapy
Respiratory therapists monitor pulmonary
function and make recommendations for breathing exercises or
respiratory assist devices as respiratory function declines or as
symptoms of shortness of breath
increase.
Respiratory therapists measure and evaluate patients' lung function
and chest muscle strength, recommend respiratory assistive devices
when necessary, and teach patients breathing exercises.
Dietitian
Dehydration and constipation are uncomfortable and unsafe risks often associated with neuromuscular diseases. Dietitians can assist patients with these issues. Dietitians also can provide weight management counseling to patients.
Social Worker
Social workers work with patients and their families and communities to assess the resources that patients need to promote their social, psychological, and physical well-being. They provide supportive services to patients and their families to help patients adjust to their illness and disability. They assist with referrals to Social Security and work with patients' insurance carriers to obtain approval for durable medical equipment or other services. They provide referrals to community resources such as equipment loan closets, attendant care services, and other appropriate resources. Perhaps most importantly, social workers act as advocates for patients and their families.
MDA Health Care Services Coordinator
Staff from the Muscular Dystrophy Association (MDA) attend the MDA Clinic at St. Joseph's Hospital to ensure that the clinic is operating in accordance with MDA guidelines; to provide information and answer questions relating to program policies and services of the MDA; to coordinate transportation, when necessary, for patients scheduled for clinic appointments when no other source is available; and to provide information about MDA programs, services, research, and other aspects of neuromuscular disease.
