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The Disease

ALS stands for amyotrophic lateral sclerosis. It is a disease that effects motor neurons, or nerve cells. It damages the ability of these cells to carry messages from the brain to the muscles. As the muscles are used less and less, they grow weaker and lose bulk. Eventually they become paralyzed. ALS does not effect sight, hearing or thinking. Most cases of ALS are sporadic, affecting anyone anywhere. Less than ten percent of ALS is familial, or has a genetic component making it hereditary.

Symptoms
There are two general types of initial symptoms. Limb onset symptoms are first noticed in the arms, legs or torso. A person may experience weakness, clumsiness, difficulty carrying or holding things, muscle twitches, and cramping. Bulbar onset symptoms are first noticed in the face, lips, tongue or throat. Experiences may include slurred speech, difficulty swallowing and chewing, or dry cough.

Diagnosis
There is no one test for identifying ALS. The diagnosis is made by ruling out many other possibilities and by observing the continuing loss of muscle over a period of months.

Incidence
ALS can strike anyone. It occurs in men and women in near equal numbers. The average age on onset is 55, although it can occur as early as the late teens. About 15 people a day (5,600 a year) are diagnosed with ALS. There are believed to be about 30,000 people in the United States at any one time living with the disease.

Treatment
Treatment is aimed at symptomatic relief, prevention of complications, and maintenance of maximum optimal function and optimal quality of life. 

  • Nutritional supplements can help those with ALS receive the nutrients necessary to maintain strength.
  • Supplemental oxygen can improve strength, reduce discomfort and aid in sleeping.
  • Certain drugs help control cramping, and saliva.
  • Orthotic devices walkers and wheelchairs can help with mobility.
  • Letter boards, slates, and computers can help with communication.
  • Rilutek®, an antiglutamate drug, appears to prolong the life of persons with ALS by at least a few months. Rilutek is manufactured by Aventis Pharmaceuticals.

Life Expectancy
Life expectancy for most people is two to five years following diagnosis. However, with recent advances in research and improved medical care, many patients are living longer and more productive lives. There are some forms of ALS that progress more slowly; up to ten percent of those with ALS will live more than ten years, and five percent may live 20 years.

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