General Information

DEFINITION--A progressive breakdown of the cells of the spinal cord, resulting in gradual loss of muscle function. This is not contagious or cancerous. Symptoms may be confused with neurologic complications of Lyme Disease.

BODY PARTS INVOLVED--Central nervous system; muscle system, especially in the hands, forearms, legs, head and neck.

SEX OR AGE MOST AFFECTED--Men over age 40.

SIGNS & SYMPTOMS--

Symptoms appear in the following order:

• Muscle twitching and weakness, beginning in the hands and spreading to the arms and legs. Weakness eventually affects muscles that control breathing and swallowing.
• Stiffening and spasticity of muscle groups.

CAUSES--Unknown.

RISK INCREASES WITH

• Age over 40.
• Family history of ALS.

HOW TO PREVENT--Cannot be prevented at present.

What To Expect

DIAGNOSTIC MEASURES--

• Your own observation of symptoms.
• Medical history and physical exam by a doctor.
• Laboratory studies, such as electromyography (See Glossary).

APPROPRIATE HEALTH CARE

• Self-care after diagnosis.
• Doctor's treatment.
• Psychotherapy or counseling to learn to cope with disability.
• Eventual hospitalization or medical facility care.

POSSIBLE COMPLICATIONS

• Pressure sores caused by immobility.
• Pneumonia caused by swallowing difficulty and choking.
• The progressive physical degeneration affects the patient's relationships, career, income, muscle coordination, sexuality and energy.

PROBABLE OUTCOME--This condition is currently considered incurable. It is usually fatal. However, pain can be relieved or controlled. Scientific research into causes and treatment continues, so there is hope for increasingly effective treatment and cure.

How To Treat

GENERAL MEASURES--

• There is no specific treatment. Supportive care is provided to control symptoms and for complicating emergencies.
• Obtain good nursing care to prevent pressure sores.
• Learn to do self-suction in order to handle increased accumulation of secretions in the lungs.
• Patients may benefit from a hospice program or local chapter of the ALS support group (see Resources for Additional Information).

MEDICATION--Your doctor may prescribe:

• Antibiotics to fight infection if pneumonia develops.
• Baclofen to help reduce spasticity.
• Antidepressant to help decrease saliva production.

ACTIVITY--

• Stay as active as possible. Weakness will gradually limit capability. A rehabilitation program can help in maintaining independence as long as possible.
• Obtain equipment that will aid in mobility, such as walker or wheelchair.

DIET--If swallowing is difficult, eat soft, easy-to-swallow foods. (See Soft Diet in Appendix.)

Call Your Doctor If