According to the American Academy of Neurology, participation in a multidisciplinary ALS clinic can help to prolong survival and improve the ALS patient’s quality of life. Treatment at the Orlando Health Comprehensive ALS Center provides access to all available ALS-related treatment, equipment, counseling and coordinated care. Patients are evaluated in a single location by a neuromuscular neurologist, nurse, physical and occupational therapist, nutritionist, speech and language therapist, respiratory therapist and social worker. Through customized plans, the clinical team focuses on patient care goals and quality of life throughout disease progression.
Although there is no cure yet for ALS, research on the disease is advancing at a rapid pace. Currently, there are two FDA approved medications for ALS patients: Rilutek and Radicava. These medications have a modest impact on slowing the disease’s progression.
Symptomatic therapies are available to improve survival and focus on quality of life. Noninvasive ventilation and therapy assist with the cough reflex to clear airway secretions offer survival benefit that can exceed one year and improve quality of life. Maintaining weight with adequate nutrition and hydration would slow the progression of the disease and improve level of energy. Successful communication strategies can improve quality of life – augmentative and alternative communication devices with eye-gaze technology are available. Stem cells are not yet being used as treatment for ALS in the US, but studies are advancing rapidly.
ALS Clinic Team Overview
- Individualized care led by a board-certified neuromuscular neurologist. Dr. Lahham has extensive experience providing comprehensive management for neurological conditions with sub specialization in the clinical and electrodiagnostic aspects of neuromuscular diseases.
- Patient care coordination and facilitation by a registered nurse who provides care coordination and patient and family education
- Speech therapist to screen for swallowing difficulties and provide recommendations of diet modifications and adaptions to eat and drink safely and efficiently. As well as evaluating speech and supporting the patient with Augmentative & Alternative Communication (AAC) systems or other assistive technology to support communication.
- Nutritional counseling from a registered dietitian, who assesses individualized nutritional needs based upon the progression of the disease and who can help the patient maintain weight with adequate nutrition and hydration.
- Physical therapist and occupational therapist to evaluate strength, physical skills and joint range of motion.
- Respiratory therapist to assess cough and breathing function and facilitating referrals to our experienced pulmonologists. As well as monitoring the use of respiratory equipment such as cough assist devices and non-invasive and other ventilatory assistance options.
- Social worker for counseling and support to patients and their families, including help arranging home care services, living space adjustments, disability processing, and mental health services.As well as offering referrals to community resources and local and national agencies that offer information and support for ALS patients. Caregiver fatigue and burden would be assessed on an ongoing basis and addressed
To schedule an appointment with the Comprehensive ALS Center, located at Orlando Health – Health Central Hospital, call (407) 296-1910.