As ALS progresses what decisions might I face?

As ALS progresses, you may face decisions about how to treat complications, such as difficulty eating, swallowing, breathing or lung infections caused by these problems. The choice you make has to be right for you and may be different from the choice another PALS might make.


As the muscles that control swallowing become weaker, inhaling food and saliva can become a problem. Getting enough food or taking medicines may be difficult. A nutritionist may recommend certain types of food supplements that are easier to take, or medication to reduce the amount of saliva may be prescribed. If these approaches fail to help, some may choose to have a tube surgically inserted through the skin into the stomach to improve nutrition and help with medicines. This is also called percutaneous endoscopic gastrostomy, or PEG.


In some people with ALS, the muscles that control breathing may become weak. Initially, extra oxygen can be given through a flexible plastic tube that is placed in the nostrils (a nasal cannula). For mild breathing problems, machines that deliver air or extra oxygen through a mask may be used. These machines are called bi-level positive airway pressure (BiPAP), or noninvasive positive pressure ventilation (NPPV) machines. Other breathing options may be available to you and should be discussed with physicians trained in treating patients with ALS.


Some patients may not have a problem with swallowing or breathing, but may notice their muscles becoming weaker over time. It may be difficult to get around without support, or do the things you were used to doing before ALS was diagnosed. Physical and occupational therapy and a wide range of support devices can help you keep your independence.


At the Maryland ALS Clinic, you will have an opportunity to discuss your ALS needs with a highly trained group of professional caregivers.