Living with Advanced MS: Respiratory Care

Patient Expert

Advanced multiple sclerosis can cause many different complications—including respiratory problems—that can become life-threatening. Not all people living with advanced MS will develop respiratory problems but it is important that patients and caregivers become aware of symptoms, complications, and appropriate interventions.

What respiratory problems are common in advanced MS?

A common symptom of MS is muscle weakness which may affect the muscles that control breathing. Muscle weakness can make breathing difficult and shallow breathing may contribute to pneumonia. Muscle weakness can also affect swallowing which may lead to aspiration pneumonia. It’s important to remember that patients with MS may have difficulty fighting infection caused by bacteria or viruses.

What are early signs of respiratory muscle weakness?

Symptoms may be subtle such as shortness of breath or a gradual increase in coughing when the person with advanced MS eats or drinks fluids. Increased coughing or total obstruction of the airway may occur when eating solids. Medications that cause drowsiness may affect a person’s ability to control swallowing as well. Or symptoms might emerge when the muscles that control breathing are under increased pressure, such as when you may be standing in chest-high water.

What signs or symptoms indicate that we should call the doctor?

The National MS Society offers an excellent booklet, Caring for Loved Ones with Advanced MS — A Guide for Families, that includes the following recommendations.

If you notice any of the following signs or symptoms, contact your doctor:

  • Increasing frequency or difficulty swallowing foods and fluids
  • Food not being chewed well
  • Coughing becoming more frequent
  • Mucous from the mouth or nose no longer clear, indicating infection
  • Respirations becoming quicker and labored; normal breaths per minutes are usually in the range of 16 to 20
  • Increased fluid build-up
  • Fever develops (you should already know at what temperature your doctor wants to be notified)
  • Complete obstruction of the airway, even if only one time, necessitating use of the Heimlich Maneuver

What can be done to recognize or prevent respiratory problems?

  • Pay attention to respirations. Are they quiet, clear, and unlabored? How many breaths per minute does the person with MS take?
  • Encourage taking 10 deep breaths every hour to keep lungs clear
  • Buy an inexpensive stethoscope and just listen to the lung sounds which should be clear all throughout the chest
  • If confined to bed, make sure the person with advanced MS is turned every two hours to improve oxygen flow
  • Annual flu and pneumonia vaccines, including the Pneumovax®  and Prevnar13® vaccines, are important to reduce risk of respiratory infection
  • Keep sick individuals away, especially those with respiratory infections; if a caregiver or family member has a cold and must be in the same room, wear a mask
  • Watch for difficulty chewing and/or swallowing food
  • Pay attention to how all medications affect breathing (do certain medications make the person sleepy or lessen the number/depth of respirations?); if so, do not give anything to eat or drink until the person with advanced MS is more alert
  • All family members who provide hands-on care should take a course in CPR and learn the Heimlich Maneuver

Once problems have developed, what can we do?

  • Continue frequent deep breathing and coughing exercises
  • Continue to turn every two hours
  • Eliminate any foods that appear to cause chewing, swallowing, or choking problems
  • Change the diet to include either soft or blended foods; do not include anything that requires much chewing
  • Utilize a thickener such as Thick-It® to improve the person’s ability to handle fluids such as soups and blended foods
  • Sit upright while eating to make it easier to swallow with less difficulty
  • If you feel uncomfortable with continuing food and fluids by mouth, tube feeding can be initiated in a hospital setting
  • If diagnosed with pneumonia, make sure all of the antibiotic is given; do not stop, even if temperature returns to normal and no more abnormally colored secretions are present
  • For very serious situations, obtain a bedside suction machine

Recommended resource:

Quality of Life and MS

Caring for Loved Ones with Advanced MS — A Guide for Families (pdf). © 2007 National MS Society