Amyotropic Lateral Sclerosis (ALS; commonly known as Lou Gehrig’s Disease)
Description: A progressive and degenerative disease of unknown cause that affects the nervous system, involving the brain and spinal cord. Degeneration progresses to total paralysis and the inability to breathe leading to death. The person’s sensory function is not affected.
Incidence: Rare (up to five per 100,000 in the US); rare under age forty; increases with age
Prevalence: Males equally with females
Signs and symptoms:
- Muscle weakness (starting in the upper extremities)
- Trouble swallowing
- Trouble walking
- Trouble talking
Risk factors:
- Family history
- Age over forty
Usual Treatment:
- Medications (though none are effective in halting the progression); support and education (emotional, spiritual, psychological counseling)
Usual course: Death usually occurs in two to five years after diagnosis; death occurs more rapidly if the lower brain is involved early in the course of the disease (difficulty swallowing may indicate this involvement).
Spiritual Considerations:
· This disease is difficult for the person who has it and the family. There is no cure, and death is usually from respiratory or kidney failure.
· The person generally remains alert, oriented, and in full passion of their senses until the end, even though the body wastes away. The need for spiritual support is enormous, as people in a dependent state will have a lot of time to think about their situation. Many people will grapple with deep spiritual issues such as “why did God let this happen to me?”
· Provide spiritual and emotional support for the patient and family through the entire course of the disease. The person will be eventually homebound. Make frequent visits.
· A few cases of longer life span or remission of the disease have been reported, but this outcome is rare.
Suggested scriptures: Psalms 37:3-5; Psalms 27; Psalms 23; Revelations 21:1-4
Resources: For an insider’s view of ALS, read Tuesdays with Morrie by Mitch Albom (published by Doubleday and available at most local bookstores).
The Muscular Dystrophy Association
1-800-572-1717
