Risk Factors and Symptoms
Living with ALS
Amyotrophic lateral sclerosis (ALS) is often referred to as "Lou Gehrig's disease." ALS is a nervous system disease that affects the voluntary muscles in your body. ALS is the most common neuromuscular disease in the world. Each year an ~5,000 new people in the United States are diagnosed and as many as 20,000 Americans are currently living with ALS.
When you have ALS:
- nerve cells in your brain and spinal cord are attacked
- nerve cells weaken and die when attacked
- nerve cells are no longer able to send the messages that cause the muscles to work
- muscles will become weak, waste away, and twitch
- eventually the brain and spinal cord lose the ability to start and control voluntary movement of these muscles
Risk Factors and Symptoms
Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their 20s and 30s. ALS occurs in greater percentages as men and women grow older. ALS is 20% more common in men than in women, however with increasing age, the incidence of ALS is more equal between men and women.
No one knows what causes ALS. ALS:
- cannot be spread from one person to another
- can run in families, but usually strikes at random
- people of any age, race and ethnic background can get ALS
Early Symptoms and Diagnosis of ALS
Early symptoms include:
- twitching, cramping, or stiffness of muscles
- muscle weakness causing trouble with walking or running
- trouble writing
- slurred or nasal speech
- trouble chewing or swallowing
It is important to see a health care provider to help you manage your symptoms. Be sure to discuss changes in your symptoms with your doctor.
No one test can provide a definite diagnosis of ALS. You may need different tests to help rule out other diseases This may include:
- electromyography (EMG)
- nerve Conduction Velocity (NCV)
- MRI
- laboratory tests
Your treatment may include using medicines to help control your symptoms. You may need to see a team of health care providers with different specialties to help you manage your symptoms.
Living With ALS
Progression of symptoms of ALS can vary from one person to another. Progressive muscle weakness and paralysis are universally experienced. Activities of daily living such as dressing, washing and buttoning clothes, can become a challenge. In more advanced stages, shortness of breath, difficulty in breathing and swallowing can occur. Eventually speech, swallowing, chewing and breathing are affected as the weakening and paralysis continue to spread to the muscles of the trunk of the body.
The sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected. Currently no cure is available, however medicines can help and sometimes prolong life. Recent advances in research and improved medical care are helping people live longer, more productive lives.
The national ALS Association is a not-for-profit health organization that gives help and hope to those facing the disease. The Association's nationwide network of chapters provides comprehensive patient services and support to the ALS community.
Pennsylvania residents can also contact their local chapter of the ALS Association:
The Greater Philadelphia Chapter of The ALS Association serves the eastern half of Pennsylvania.
For more information visit the chapter's website or call 1-877-GEHRIG-1.
The Western Pennsylvania and West Virginia Chapter of The ALS Association serves the western half of Pennsylvania.
For more information visit the chapter's website or call 1-800-967-9296.