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Genetic and Rare Diseases Information Center (GARD)

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Amyotrophic lateral sclerosis

Other Names for this Disease
  • ALS
  • ALS1
  • Amyotrophic lateral sclerosis type 1
  • Lou Gehrig disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

Is there any proof that a special diet helps slow down the progression of ALS? Are there any impending cures? Is it true that riluzole is most effective for patients with bulbar-onset?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might amyotrophic lateral sclerosis (ALS) be treated?

The Food and Drug Administration (FDA) has approved the first drug treatment for the disease—riluzole (Rilutek). Riluzole is believed to reduce damage to motor neurons by decreasing the release of glutamate. Clinical trials with ALS patients showed that riluzole prolongs survival by several months, mainly in those with difficulty swallowing. The drug also extends the time before a patient needs ventilation support. Riluzole does not reverse the damage already done to motor neurons, and patients taking the drug must be monitored for liver damage and other possible side effects.

Other treatments for ALS are designed to relieve symptoms and improve the quality of life for patients (palliative care). This supportive care is typically provided by multidisciplinary teams of health care professionals such as physicians; pharmacists; physical, occupational, and speech therapists; nutritionists; social workers; and home care and hospice nurses. Working with patients and caregivers, these teams can design an individualized plan of medical and physical therapy and provide special equipment aimed at keeping patients as mobile and comfortable as possible.

Physicians can prescribe medications to help reduce fatigue, ease muscle cramps, control spasticity, and reduce excess saliva and phlegm. Drugs also are available to help patients with pain, depression, sleep disturbances, and constipation. Pharmacists can give advice on the proper use of medications and monitor a patient's prescriptions to avoid risks of drug interactions. Physical therapy and special equipment can enhance patients' independence and safety throughout the course of ALS. Occupational therapists can suggest devices such as ramps, braces, walkers, and wheelchairs that help patients conserve energy and remain mobile. ALS patients who have difficulty speaking may benefit from working with a speech therapist. Patients and caregivers can learn from speech therapists and nutritionists how to plan and prepare numerous small meals throughout the day that provide enough calories, fiber, and fluid and how to avoid foods that are difficult to swallow.

Social workers and home care and hospice nurses help patients, families, and caregivers with the medical, emotional, and financial challenges of coping with ALS, particularly during the final stages of the disease. Respiratory therapists can help caregivers with tasks such as operating and maintaining respirators, and home care nurses are available not only to provide medical care but also to teach caregivers about giving tube feedings and moving patients to avoid painful skin problems and contractures. Home hospice nurses work in consultation with physicians to ensure proper medication, pain control, and other care affecting the quality of life of patients who wish to remain at home.[1]

Last updated: 11/10/2010

Is riluzole more effective for individuals with bulbar-onset amyotrophic lateral sclerosis (ALS)?

Some research has indicated that use of riluzole has prolonged survival amongst individuals with bulbar-onset ALS, but not in subjects with limb-onset ALS.  It has also been demonstrated that in patients over age 70, riluzole treatment is associated with a longer median survival time and a reduction in mortality rate regardless of the site of the onset of symptoms.[2] Bulbar-onset patients appear to particularly benefit from riluzole for unclear reasons.[3]

Last updated: 11/10/2010

Can changes in a person's diet help slow the progression of amyotrophic lateral sclerosis (ALS)?

Proper nutrition and a balanced diet are essential for individuals with ALS to maintain their weight and strength.[4]  Nutritional management, which has been shown to improve prognosis, has become a focus in managing the disease.[5]

There is currently limited information on whether specific diets may affect the progression of ALS.  The U.S. National Institutes of Health, through the National Library of Medicine, developed to provide patients, family members, and members of the public with current information on clinical research studies.  Currently, 4 clinical trials are identified as enrolling individuals with ALS to gain more information on the use of dietary supplements.  To find these trials, click on the link above.
Last updated: 11/10/2010