Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease)
Amyotrophic lateral sclerosis (ALS) is a rare, degenerative neurological disease affecting neurons that control voluntary muscle movement such as walking, moving arms, talking, swallowing and breathing.
At the Orlando Health Comprehensive ALS Center, our compassionate team of experts is dedicated to working closely with you to manage different aspects of the disease, including slowing the progression of weakness and decreased mobility that comes with ALS while helping you maintain the best quality of life possible.
Our multidisciplinary team is led by a board-certified neuromuscular neurologist who specializes in the diagnosis, comprehensive management, treatment and clinical trials for ALS, also known as motor neuron disease and Lou Gehrig’s disease. Patient care and education are coordinated by a registered nurse and supported by our speech, physical, occupational and respiratory therapists. You will also be supported by a nutritional counselor and social worker.
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ALS involves the loss of motor neurons in the brain and spinal cord, causing progressive but painless weakness of certain muscles, which might start in one of the limbs, tongue, swallowing, speech or breathing muscles.
Because the symptoms of ALS can resemble other conditions, the disease is often misdiagnosed. As the disease progresses, patients will experience significant weight loss and muscle deterioration, and they may require ambulatory and respiratory support as the condition affects the breathing muscles.
In the U.S., fewer than 10,000 people are diagnosed with ALS every year, with about 100 new cases identified in metropolitan Orlando. At any given time, more than 30,000 Americans live with ALS. While up to 20 percent of ALS cases are known to be inherited, most ALS patients have no family history of the disease.
There is usually no major impact on thinking or cognitive functions unless the patient develops a form of dementia, FTD, which could be seen in 15 percent to 20 percent of patients with ALS.
Early symptoms include:
It is important to have ALS diagnosed sooner rather than later so you can receive care and support to slow its progression.
ALS is diagnosed through clinical examinations and a series of diagnostic tests and imaging studies of the brain and the spine. A major part of the diagnostic process is ruling out other diseases that mimic ALS symptoms.
Depending on the process, the diagnosis of possible, probable and definite ALS would be made. The prognosis is variable, and every patient is different. As the disease progresses, patients may experience significant weight loss and muscle loss. They may require respiratory support as well as access to communication and ambulatory devices.
At the Orlando Health Comprehensive ALS Center, we provide access to all available ALS-related treatments, types of equipment, counseling and coordinated care. Patients are evaluated in a single location by a board-certified neuromuscular neurologist and a team that includes a nurse, physical and occupational therapists, nutritionist, speech and respiratory therapists, and social worker. Through customized plans, our clinical team focuses on customized patient care goals and quality of life throughout disease progression.
Although there is no cure for ALS, research on the disease is advancing rapidly. Currently, there are three FDA-approved medications for ALS patients: Riluzole, Edaravone and a combination drug of sodium phenylbutyrate and Taurursodiol. These medications have a modest impact on slowing disease progression, but they can be prescribed together to increase the effect.
We also provide multicenter national and international clinical trials. Participation in a multidisciplinary ALS clinic can help prolong survival and improve the ALS patient’s quality of life, according to the American Academy of Neurology.
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 and survival benefits as well as the improvement of quality of life. Maintaining weight with adequate nutrition and hydration would slow the progression of the disease and improve the level of energy. Successful communication strategies can improve quality of life – augmentative and alternative communication devices with eye-gaze technology are available.
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