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Living with ALS

With ALS, it’s important to be proactive about managing your disease. There are many steps you can take that may help enhance your quality of life, reduce possible symptoms and even prolong survival.

Learn about helpful interventions

As ALS progresses, the muscles that help with certain functions like eating and breathing can weaken, making these tasks particularly challenging. Not only are these functions necessary to maintain your quality of life, but they also can reduce your survival time if not managed properly.

Below are some interventions you can choose to stay ahead of your disease. It’s important to remember that, before making any lifestyle changes, you should first speak with your healthcare provider(s).

  • Nutritional status

    utensil

    Why It’s Important:
    Malnutrition affects people with ALS. The main cause of malnutrition is difficulty swallowing due to a weakness in the muscles that involve swallowing or chewing food.

    Taking the Right Steps:
    If you can still chew and swallow safely, consume foods and liquids high in calories and high
in protein.

    If eating and drinking are considered unsafe, your healthcare team may consider a percutaneous endoscopic gastrostomy (PEG) tube, which is a small tube that is inserted directly into the stomach to provide a means of delivering food, liquid, and medications. Most people find PEG tubes much more comfortable and convenient than they originally thought.

  • Respiratory function

    lungs

    Why It’s Important:
    As the muscles involved in respiration (breathing) weaken, it becomes harder to breathe. Symptoms may include gasping for air, fatigue, frequent yawning, morning headache, insomnia, and difficulty lying flat. Respiratory failure is the leading cause of death in ALS, so it's important to intervene early.

    Taking the Right Steps:
    Noninvasive ventilation (NIV) can assist with breathing by using air to expand the lungs. This can be done via a face mask or nasal pillow and is intended as part-time respiratory support. Starting NIV earlier as opposed to later, when respiratory function worsens, has been shown to prolong survival.

    Many people eventually require invasive ventilation that supports the entire respiratory system. This form of respiration requires the surgical insertion of a tracheostomy tube into the neck.

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