What is ALS?
ALS, or amyotrophic lateral sclerosis, is a neurological disease in which motor neurons no longer function. Motor neurons allow communication between the brain, nerves, and muscles. As these motor neurons degenerate, the brain can no longer control the muscles in the body. Over time, people afflicted with ALS can no longer move, speak, eat, or breath. Typical life expectancy is 2-5 years from initial symptoms; however, there are individuals who live much longer.
Who does it affect?
Approximately 5,000 Americans are newly diagnosed with ALS each year and an estimated 16,000 Americans are living with the disease at any given time. ALS can affect anyone, though the majority of those diagnosed fall within the ages of 40 and 70. Men are 20 percent more likely than women to have ALS, but the rate of incidence becomes more equal with age. There are two types of ALS: sporadic and familial. Sporadic ALS affects 90% of patients, while familial ALS affects 10% of patients and is characterized by an inherited mutated gene. Those who have served in the military are twice as likely to develop ALS - regardless of having served during peacetime or wartime.
What is the treatment?
Although there is no cure for ALS, there are four FDA approved drugs available in the United States: Radicava, Rilutek, Tiglutik, and Nuedexta. These four drugs aim to slow the progression of the disease. Available since 1995, Rilutek is a pill that inhibits glutamate release and prolongs life approximately three months. Tiglutik is the liquid form of Rilutek, enabling those with feeding tubes to continue taking the drug. Nuedexta is for the treatment of pseudobulbar affect, which is characterized by uncontrolled crying or laughing that sometimes accompanies neurological disorders. Radicava was approved as recently as 2017, making it the first new drug to treat ALS in 22 years. The administration of this drug requires hour-long infusions for 14 days in a row, followed by 10 days of rest. In addition to these FDA approved medications, there are several ongoing clinical trials that many patients choose to participate in.
In order to manage symptoms, it is recommended that those living with ALS should seek occupational, physical, speech, and respiratory therapy. Proper nutrition and hydration is also necessary to maintain weight and prolong quality of life. Although patients' needs vary, most will eventually require wheelchair assistance, home renovations to support accessibility, respiratory devices, feeding tubes, and more.