Pneumonia is one of the leading causes of death among those with ALS because of decreased respiratory capacity, weakened diaphragm musculature, accumulation of phlegm and mucus in the throat and/or nasal passage, and/or contact with others who may cause or exacerbate infection.
Congestion, the build-up of fluid or "swollen tissue" in the body—particularly the lungs and/or nasal cavities—poses great risk for ALS patients. The decreased ability of the diaphragm makes it difficult to sneeze out the excess mucus (from the nose) or cough up phlegm (from the lungs, throat and larynx). Mucus and phlegm both contain bacteria and attract more bacteria. If left unaddressed, they can lodge in the lower lobes of the lungs and ultimately cause pneumonia.
The first line of attack should be prevention, as pneumonia can be challenging to treat once it develops. Edward Kasarskis, M.D., Ph.D. and Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center, states that the airway must be kept clear and the lungs expanded, potentially through noninvasive ventilation (BiPAP) and respiratory muscle exercises. Avoid bacterial and viral infections by getting the pneumococcal vaccine (Pneumovax) and the annual flu vaccine; keeping away from friends, family and others who are sick; using hand sanitizer; getting as much sleep as possible; and staying well nourished. Smoking is strongly discouraged, as it can increase lung damage, and asthma should be kept under close control.
If you notice a build-up of discolored phlegm or mucus, consult your physician immediately. Your course of treatment will depend on whether the form of pneumonia you have is viral (also known as community-acquired) or bacterial (also known as hospital-acquired, as it is most common in health care facilities). Bacterial pneumonia is treated with an antibiotic, chosen based on the patient’s profile and the specific organism causing the pneumonia. Viral pneumonia is less serious and often caused by the influenza virus; however, because any respiratory impairment puts ALS patients at risk, it should be treated immediately with a prescription antiviral drug like Tamiflu. An antibiotic may also be prescribed to prevent the development of bacterial pneumonia.
Symptoms of both viral and bacterial pneumonia can be treated with expectorant (not suppressant) cough medicines like Mucinex or Robitussin decongestants or nasal sprays; increased hydration; inhaled medications like Mucomyst or Albuterol; and nebulizers using distilled water, saline solution or other medication, antibiotics, effervescent acetylcysteine. A Cough-Assist device (generically known as a "Mechanical Insufflator-Exsufflator"), ordered by a physician, mobilizes secretions and helps patients to cough them out. There is also an external vest (“Theravest”) that vibrates, helping to release tenacious mucous.
Because pneumonia can be difficult to eradicate once it develops and often requires hospitalization for those with ALS, patients should be vigilant about prevention and contact their physician immediately if a build-up of discolored phlegm is apparent.
It is very important that every patient always discuss our recommendations and suggestions with their primary physician.