Breathing and Nutritional Assistance for ALS

Breathing Aids as a Treatment of ALS

When the muscles that assist in breathing weaken, nocturnal ventilator assistance may be used to aid breathing during sleep. Such devices artificially inflate the lungs from various external sources that are applied directly to the face or body. When muscles are no longer able to maintain oxygen and carbon dioxide levels, these devices may be used full-time.
People may eventually consider forms of mechanical ventilation (respirators) during later treatment of ALS. This type of machine inflates and deflates the lungs. To be effective, this may require a tube that passes from the nose or mouth to the windpipe (trachea).
For long-term use, an operation such as a tracheostomy, in which a plastic breathing tube is inserted directly into the windpipe through an opening in the neck, may be needed.
People living with ALS and their families should consider several factors when deciding whether and when to use one of these options. Ventilation devices differ in their effect on quality of life and in cost.
Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. People need to be fully informed about these considerations and the long-term effects of life without movement before they make decisions about ventilation support.

Other Challenges

Social workers and home care and hospice nurses help people with ALS, their families, and caregivers with the medical, emotional, and financial challenges of coping with this disease, particularly during the final stages.
Social workers provide support, such as:
  • Assistance in obtaining financial aid
  • Arranging durable power of attorney
  • Preparing a living will
  • Finding support groups for patients and caregivers.
Home care nurses are available to provide treatment of ALS and teach caregivers to:
  • Maintain respirators
  • Give tube feedings
  • Move 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 people who wish to remain at home. The home hospice team can also counsel patients and caregivers about end-of-life issues.
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