Facts about ALS for Patients and Caregivers
General Information about ALS
- Amyotrophic Lateral Sclerosis (ALS) was first described in 1869.
- ALS is also referred to as Lou Gehrig's disease in the United States.
- Most people afflicted with ALS are between the ages of 40 and 70, but it can affect younger adults and the elderly. Men are affected slightly more frequently than women.
- ALS mostly affects upper and lower motor neurons, which are the nerve cells that control movements of the arms, legs, face, diaphragm, throat and tongue.
- Automatic movements (such as the gut moving food and the heart beating), sensation and eye movements are generally not affected. ALS usually has minimal impact on a person’s intellect and bowel/bladder control. ALS is usually not painful.
- Some people with ALS develop behavior changes that can interfere with decision-making.
- In the United States, there are approximately 5,000 people diagnosed each year with ALS and 30,000 people with the disease at any given time.
- Sporadic ALS (SALS) occurs in people without a family history of ALS.
- Familial ALS (FALS) occurs in 5-10% of cases, and there is usually a clear family history of the disease. Genetic testing is available, but it only detects 20% of hereditary cases, so it cannot rule out FALS.
- The cause of ALS is unknown, and most scientists believe that a complex interaction of genetics and environmental factors cause sporadic ALS. There is no evidence that any particular toxin, occupational exposure or nutritional deficiency causes ALS.
Signs and Symptoms of ALS
- ALS usually starts with painless weakness developing in a hand or foot and can be mistaken for more common problems, such as carpal tunnel syndrome or a pinched nerve.
- Muscle stiffness and wasting are also common.
- About 25% of the time ALS starts with slurred speech or swallowing problems.
- Muscle cramps and twitching are common but are also common in healthy people.
- Most ALS patients do not experience significant depression, dementia or behavior problems but many patients become more emotional, crying and laughing more easily.
Treatment of ALS
- Riluzole is the only FDA-approved medication for ALS, but its effect is quite modest. It slows the progression of the disease slightly and is generally safe with tolerable side effects.
- Other medications can be prescribed, and suggested home remedies can minimize symptoms such as muscle cramps, spasticity (stiffness), excess saliva, behavior changes, depression, constipation, insomnia, anxiety and weight loss.
- The ALS Clinic has a team approach to ALS care that improves patient quality of life and longevity.
- The ALS Center provides opportunities for most patients to become involved with clinical trials, testing new treatments and investigating the cause of ALS.
The average life expectancy from the beginning of symptoms is around 3 years, but about 25% of patients live 5 years and 10% will survive 10 or more years.
Further Information about ALS
View a lecture on Motor Neuron Diseases. (PDF)
Helpful Web Links
ALS Association (ALSA)
ALSA - North Carolina Chapter
ALSA - South Carolina Chapter
ALSA - Tennessee Chapter
ALSA - Virginia Chapter
ALSA - West Virginia Chapter
Muscular Dystrophy Association's ALS Division
Northeast ALS Consortium
Robert Packard Center for ALS Research