Lou Gehrig's Disease (Amyotrophic Lateral Sclerosis or ALS)

Our neurologists are skilled in the latest treatments for ALS, commonly known as Lou Gehrig’s disease, a neurodegenerative disorder characterized by muscle weakness and decreased mobility. Our focus is on slowing the progression of your symptoms, preventing unnecessary complications and making you more comfortable and independent.

About ALS

ALS is a rare, degenerative disease of motor neurons in the brain and spinal cord that results in progressive muscle weakness. In the United States, 5,000–6,000 people are diagnosed with ALS every year, with approximately 50-60 new cases occurring in metropolitan Orlando. At any given time 20,000–30,000 Americans live with ALS. While 5–10 percent of ALS is inherited, the majority of ALS patients have no family history of the disease. The average age of onset for ALS is 55 years, but it can be seen in people from their early 20s to 80 years and older. People with ALS live an average of 20–48 months from the time they begin experiencing symptoms, although 10 percent of patients can live longer than 10 years.

ALS is the most common form of motor neuron disease. There are "relatives" of ALS, including progressive muscular atrophy, primary lateral sclerosis and progressive bulbar palsy.

Symptoms

Individuals with ALS may have symptoms such as speech or swallowing impairment, breathing difficulties, limb stiffness, muscle weakness, twitches and cramps. They typically don’t experience significant pain, and their sensory functions, such as sight, smell and taste, will remain normal. There is usually no major impact on thinking, but up to 15–20 percent of patients with ALS have dementia. 

Because the symptoms of ALS can resemble other conditions, the disease is often misdiagnosed, and patients may go from doctor to doctor before receiving an accurate diagnosis. As the disease progresses, patients will experience significant weight loss and muscle deterioration, and require respiratory support as the condition affects the breathing muscles.

Diagnosis

It’s important to have ALS diagnosed sooner rather than later to help prevent its progression.

There is no one test or procedure that is used to diagnose ALS. Rather, it is diagnosed through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS. Screening begins with blood and urine laboratory testing. Brain and spine imaging tests (MRIs) are likely, with additional tests to be ordered depending on the patient’s indications.

The diagnosis is made on the basis of history and physical examination. Depending on the clinical findings and test results, the diagnosis of possible, probable and definite ALS would be made. ALS is the most common form of motor neuron disease. There are "relatives" of ALS, including progressive muscular atrophy, primary lateral sclerosis and progressive bulbar palsy.  The prognosis is variable in different motor neuron diseases. Avoiding the delay of ALS diagnosis would reduce patient frustration and uncertainty of the cause of symptoms and would enable earlier use of a disease-modifying therapy. As the disease progresses, patients will experience significant weight loss and muscle deterioration, and require respiratory support as the condition affects the breathing muscles, so early diagnosis is crucial.

Treatment

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.

Resources

• The ALS Association (ALSA) is a national not-for-profit organization providing help to those facing the disease through research, patient and community services, public education and advocacy.
• Access to ALS Support Groups for patients and caregivers are available through the ALS Association.
• The ALS Untangled group includes neurologist-published reviews of alternative and off-label treatments for ALS.
• Patients Like Me is an online community committed to making a difference for patients and their health.
• ClinicalTrials.gov offers information about clinical drug trials in the United States.
• Department of Veterans Affairs benefits. ALS has been listed as a disease entitled to presumptive service connection after military service. The ALS Association has posted information about Service Connected Benefits. For more information, contact [email protected].