ALS (Lou Gehrig's Disease)
Amyotrophic lateral sclerosis (ALS) is commonly known as "Lou Gehrig's disease," named after the famous New York Yankees baseball player who was forced to retire after developing the disease in 1939.
ALS is a progressive disease that destroys nerve cells in the brain and spinal cord which control the muscles throughout the body. When these nerve cells (also called motor neurons) die, the brain can no longer send impulses (messages) to the muscle fibers that normally result in muscle movement. The disease most commonly afflicts people between the ages of 40 and 70. As many as 30,000 Americans have the disease at any given time.
The earliest symptoms of the disease depend upon which nerves and muscles are first affected. Any muscle group may be the first to show signs of the disease. For example, the person may experience twitching and weakness of the muscles of the hands or lower legs. If the muscles of the face or throat are affected, the problem at onset would be difficulty with speaking, chewing, swallowing or movements of the tongue and face. If the muscles of the chest are affected the person may have difficulty breathing. In some instances the first symptoms may be involuntary weeping or laughing. In the beginning, muscle groups on only one side of the body may be affected, but as time passes, more and more muscles on both sides are involved and the patient becomes totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected.
A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment---"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in this region of the cord.
Resources for Caregivers and Service Providers
Services for patients are offered through the two New York Chapters of The ALS Association. The Chapters also provide information, training, and services for caregivers, health care providers, and researchers.
The Greater New York Chapter serves all of New York City, Long Island, Westchester County, and the Hudson Valley.
The Upstate Chapter serves Central and Western New York State.
ALS Centers of Excellence
The ALS Association Certified Center program defines, establishes and supports a national standard of care in the management of ALS. The ALS Centers encourage and provide state-of-the-art care and clinical management of ALS through:
- Multi-disciplinary care of the person with ALS and his/her family
- Specially-trained clinical staff knowledgeable about the needs of those living with ALS
- Collaborative work among Centers to enhance ALS patient care and conduct research studies
New York State has three ALS Association Certified Centers of Excellence
- Beth Israel Medical Center
New York, NY
- SUNY Upstate Medical University
- Stony Brook University Hospital
East Setauket (Suffolk County), NY
National ALS Registry
The goal of the National ALS Registry is to collect information on people living with ALS to help scientists learn more about the disease.