How Long Can You Live With ALS?

Amyotrophic lateral sclerosis (also called ALS or Lou Gehrig’s disease) is a progressive and fatal disease, attacking the cells in the nervous system (neurons) that control voluntary movement. Jean-Martin Charcot, a French neurologist, discovered the disease in 1869.

The nerve cells that control the voluntary movement are called motor neurons. This disease affects and kills motor neurons over time. Neuronal death results in the inability of the brain to control the muscles of the body. This leads to a progressive decline in the ability to talk, write, pick up or hold things, swallow, and ultimately breathe (processes controlled by the muscle). 

Presently there is no cure for ALS. People with this disease have a shortened lifespan and may die within a few years of diagnosis. ALS most commonly affects whites, males, and people over the age of 60 years.

ALS has two types:

• Sporadic ALS (SALS)
• Familial ALS (FALS). 

Sporadic ALS (SALS) is the most common form of disease in the United States. It accounts for 90 to 95 percent of all cases of ALS. The cause of sporadic ALS is unknown. Various factors implicated in the causation of ALS are:

• Glutamate: built of a substance called glutamate that damages the nerve cells.
• Smoking
• Exposure to environmental toxins (e.g., in soldiers during the war)
• Exposure to heavy metals like lead
• Oxidative stress (substances released during the wear and tear of the body damage the body if accumulated over a long time)
• Immunity problems: The body makes proteins and mounts an attack against the proteins of its own.

Familial ALS or (FALS) is seen in 5 to 10% of all ALS cases in America. People with familial ALS inherit the disease through genes. In families with ALS, there is a 50% chance each child will inherit the gene carrying the disease and may develop ALS.

There is no cure available for ALS presently. The disease essentially has a progressive and fatal course. Once the disease process begins there is a continuous decline in the ability to talk, write, pick up or hold things, swallow, and ultimately breathe. Research is being actively done the world over to develop more treatment options and a definite cure for ALS. 

Currently, four drugs are approved by the U.S. Food and Drug Administration to treat ALS:

• Riluzole
• Nuedexta
• Radicava
• Tiglutik

Although these drugs cannot cure ALS, they can help improve a person’s life expectancy and quality of life.

People with ALS may experience a better quality of life by seeking care in multidisciplinary ALS clinics. These clinics provide specialty care to people living with ALS. Care provided through multidisciplinary ALS clinics may also increase the lifespan of people living with the disease.

Additionally, participating in support groups for ALS can also help in improving the quality of life for ALS patients. 

There is no definitive prevention method for ALS. People with ALS, however, may participate in clinical trials, the National ALS Registry, and the National ALS Biorepository. Through their participation, they can help researchers learn about the likely causes and risk factors for ALS.