ALS-Lou Gehrig's Disease

Basic information about amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.

Amyotrophic lateral sclerosis (ALS), which is commonly referred to as Lou Gehrig’s Disease, is a degenerative disease of the nervous system that affects motor neurons that carry message from the brain and spinal cord to the muscles. Generally, individuals are diagnosed with ALS between the ages of 35 and 65, and, once diagnosed, live approximately three to five years. More than 5,000 people are diagnosed with ALS each year and as many as 30,000 Americans have the disease at any time.

ALS occurs when specific nerve cells in the brain and spinal cord that control voluntary movement gradually degenerate. The loss of these motor neurons causes the muscles under their control to weaken and waste away, leading to paralysis. ALS manifests itself in different ways, depending on which muscles weaken first. Symptoms may include tripping and falling, loss of motor control in hands and arms, difficulty speaking, swallowing and/or breathing, persistent fatigue, and twitching and cramping, sometimes quite severely.

To date, no one has discovered the cause of this disease. Research indicates that it may be related to allergies, infectious or viral agents, or even heredity. The disease has also been associated with the amino acid glutamate, which scientists suspect is not reabsorbed in the brain in ALS patients. As a caregiver, it’s important to remember that while there currently isn’t a cure for ALS, there are things you can do to better understand your loved one’s condition and help him or her achieve a higher standard of living.

First, learn as much as you can about ALS and remain up-to-date on research and treatment. It’s particularly important to recognize and obtain treatment for the symptoms associated with ALS, including:

  • Slight muscle weakness
  • Acute inflammation of the lungs (inhalation of food or stomach contents)
  • Low levels of oxygen in the blood (anoxia)
  • Severe weight loss
  • Uncontrolled twitching of the muscles (fasciculations)
  • Clumsy hand movements
  • Difficulty performing delicate tasks with the hands or fingers
  • Impairment and final loss of functioning of the tongue, mouth, and/ or voice box
  • Progressive weakness of the lips
  • Slower speech
  • Swallowing (dysphagia)
  • Night leg cramps (especially in the calf or thigh)
  • Stiffness in the legs

While the average life expectancy for those diagnosed with ALS is generally three to five years, some individuals live with ALS for as many as 20 years. There is no cure for ALS; nor is there a proven therapy that will prevent or reverse the course of the disorder. The Food and Drug Administration (FDA) recently approved riluzole, the first drug that has been shown to prolong the survival of ALS patients.

Current ALS treatments focus mainly on providing symptom relief. Therefore, it’s important to ask your loved one what can be done to alleviate or lessen any discomfort he or she is feeling. Because ALS is a progressive disease, symptoms may change over time. Try to keep communication between yourself, your loved one, and his or her health-care team open to facilitate treatment.

Although individuals with ALS must cope with their bodies progressively degenerating, their mental abilities tend to remain constant. Most likely, your loved one will continue to function at his or her normal cognitive level, so it’s important to remember that he or she is still mentally capable. You may also want to make sure that other individuals, and especially those in your loved one’s care team, are aware that he or she is not mentally affected.

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