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ALS Basics: Learning to Live With This Uncommon Condition


Receiving a diagnosis of amyotrophic lateral sclerosis (ALS) is scary and overwhelming. Many people have only a basic knowledge of the condition: It's generally known that it is incurable and progressive. Whether it's you or a close loved one, it's so important to remember that no one can predict how the condition will affect day-to-day living. Furthermore, medical advancements have made it possible to enjoy a higher quality of life with the disorder and live with it for many years.

What Is ALS?

Amyotrophic lateral sclerosis is an uncommon disease with no definitive cause or cure. Sometimes called Lou Gehrig's disease after the famous baseball player who was stricken with it in the prime of his career, the disorder affects the way your body's motor neurons work. These nerve cells enable you to move your arms and legs, swallow, and perform other voluntary muscle functions.

The CDC estimates that amyotrophic lateral sclerosis currently affects about 12,000 people in the United States of all races and ethnicities. It is thought to occur at a rate of about four cases per 100,000 people, and it generally affects more men than women. Most people are first diagnosed between the ages of 40 and 60, but you can develop the disorder at any age.

Causes

The underlying disease process deprives motor neurons of vital nutrients. Eventually, this causes your motor neurons to degenerate and die. But why does this happen?

Thanks to ongoing research, scientists have identified a combination of gene mutations that cause perhaps 10 percent of amyotrophic lateral sclerosis cases. However, they remain puzzled by the fact that most cases of amyotrophic lateral sclerosis occur in people without these gene mutations. Researchers continue to look for the definitive cause of the disorder.

Symptoms, Treatments, and Prognosis

Because amyotrophic lateral sclerosis affects the motor neurons, which are responsible for controlling voluntary muscle movements, the disorder's first symptoms may involve subtle difficulties in moving hands, arms, or legs. You also may notice slight problems swallowing or changes in the pitch of your voice. But like many disorders, this one affects every person differently.

You will experience progressive muscle weakness throughout the body, which can occur over the course of three to 10 years or longer. Eventually, amyotrophic lateral sclerosis affects a person's ability to breathe.

While the disorder can't be cured, it can be managed with medications to extend and improve quality of life. One new medication, riluzole, has been shown to prolong life for several months. This medication also may allow you to live longer before requiring additional help with breathing.

People with amyotrophic lateral sclerosis often go from uncontrollable laughing to crying in the blink of an eye. Another medication, dextromethorphan combined with quinidine, helps smooth these abrupt emotional swings.

Tips for Living With ALS

No one can predict how amyotrophic lateral sclerosis will affect any individual person because the disorder's course is different for everyone. However, as the disease progresses, you undoubtedly will need to adapt your living situation to accommodate certain limitations. The Muscular Dystrophy Association offers a free, downloadable guidebook to help you live as well as possible with the disease. Called "Everyday Life With ALS: A Practical Guide," it offers these tips:

  • Obtain practical assistive devices to help you perform everyday tasks such as talking on the telephone.
  • Learn techniques for conserving your physical energy to help you cope with the disorder as it progresses.
  • Consider modifying your home environment so you can continue to live in comfort and safety.
  • Evaluate assistive technology to help you communicate when speech becomes difficult.
  • Develop an exercise routine and stick with it to stave off muscle weakness and reduce stress.

As researchers continue to investigate the causes of amyotrophic lateral sclerosis and effective treatments, people are living longer than ever with the disorder. Through medication and the support of family and friends, you can face this disease with strength and vitality for many years.

If you'd like to contribute to the scientific body of knowledge surrounding this disorder, consider joining the National Amyotrophic Lateral Sclerosis Registry. This database, administered by the CDC, collects information that you voluntarily provide to help scientists find the cause of ALS -- and possibly even discover a cure.

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