What is ALS?
ALS (amyotrophic lateral sclerosis), commonly known as Lou Gehrig’s Disease, attacks and kills the nerve cells which control muscle movement (motor neurons). Over time, people with ALS lose the ability to move, to speak, to swallow and finally to breathe. Patients in the later stages of the disease are completely paralyzed; yet their minds are generally not impaired and often remain sharp despite the progressive degenerating condition of the body.

Over 5,000 people in the U.S. are newly diagnosed with ALS each year (about 15 new cases a day), about the same rate as multiple sclerosis. As many as 30,000 Americans have ALS at any given time and the disease most often strikes between the ages of 40 and 70. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. Recent studies have shown that military veterans are more likely to develop ALS, although the reasons for this are not yet known.

What causes it?
Many research studies have focused on finding the cause(s) of ALS. Although recent research has led to promising new clues, and advances in the tools needed to expand research, the answers have not been found. The disease is nothing that anyone did to you, nor anything that you did to yourself. You cannot “catch” ALS. ALS is not contagious.

A small percentage of ALS is inherited (familial ALS) meaning that it occurs more than once in a family lineage. One of the major breakthroughs in the 1990s in ALS research was the identification of the mutant SOD1 gene associated with about 20% of familial ALS cases. Genetic research has been accelerated to identify other mutant genes associated with the remaining 80% of inherited ALS that will contribute to our understanding of both familial and sporadic ALS.

Physical therapy, rehabilitation techniques, and assistive devices help patients learn how to work around the weakness and functional disability caused by the disease. In addition, clinical trials have revealed that some compounds alter the progression or course of ALS. Rilutek^® was approved in 1996 as the first drug to alter the course of the disease. There is some evidence that people with ALS are living longer, at least partly due to these kinds of therapies.

There is hope...and help. Hope, because experimental treatments that might slow the progression of ALS and improve the quality of life are now available for the first time. Help, because The ALS Association funds cutting edgeALS research and provides information and programs to address the feelings of uncertainty and isolation that often accompany a life-threatening illness.

How does it affect my job?
Having a diagnosis of ALS does not automatically mean you should stop working. You may choose to work as long as you are able.

Years ago, people with ALS were reluctant to disclose information about the diagnosis to their employers, fearing it would have a negative effect on their continued employment. Today, the Americans With Disabilities Act (ADA) guarantees equal opportunity for disabled individuals in employment, public accommodations, transportation, state and local government services, and telecommunications. The ADA requires that employers modify jobs, the work environment, or the manner in which jobs are customarily performed to enable qualified individuals to continue employment. Three examples of reasonable accommodations may include:

• Making the building and work site accessible (e.g., installing ramps for wheelchairs);
• Modifying set work hours to permit disabled persons to drive or take public transportation during non-peak hours.
• Acquiring special equipment or devices (e.g., a headset telephone or speaker phone for an employee with hand or arm weakness).

Through our free patient services and communication programs, the ALS Association-DC/MD/VA Chapter provides people with ALS(PALS) new and alternative means to communicate, stay active and continue to participate in everyday activities.

If you find you are no longer able to work because of your physical limitations, you may be eligible for short or longer-term disability benefits from your employer.

Can it be prevented or treated?
Although there is not yet a cure for ALS, we can do much to help patients live more productively and independently, improving their quality of life. This approach emphasizes the treatment of a patient's symptoms and encourages them to become part of the management care team.