About ALS
Overview    |    Symptom Management

Symptom Management

While there is no cure for ALS, there are treatments that help ease symptoms and maintain function and quality of life even as the disease progresses. Below are brief introductions to the most prominent symptoms and their management. Our team can help you understand your symptoms better, and give you more information on the treatments that are right for you.

Breathing
Speech
Swallowing and Nutrition
Saliva
Mobility
Anxiety and Depression
Cognitive and Behavioral Changes

 

Breathing

Most people with ALS will eventually develop weakness of the muscles that help them breathe. This leads to shortness of breath, especially when lying down or after exertion. Insufficient lung ventilation (the "in and out" of breathing) is especially common during sleep, leading to poor sleep, restlessness, and morning grogginess.

The ability to cough is also impaired as ALS progresses. A strong cough is essential for moving mucus out of the lungs, reducing the chances of respiratory infection.

As the disease progresses, our team will monitor your "vital capacity," or the amount of air you are able to move in and out of your lungs. We will also monitor the strength of your cough.

There are several treatment options for people with reduced vital capacity:

  • Breath stacking is a technique you can learn to get more air into your lungs. Many people with ALS use breath stacking to maintain their daily function even as their respiratory muscles weaken. Our staff can teach you the technique so you can practice it before you will need it.
  • A cough-assist machine improves your cough by first increasing and then rapidly decreasing the pressure in your airways. The rapid lowering of pressure acts like a cough to move secretions up from your lungs into your throat, where they can be removed.
  • Non-invasive positive-pressure ventilation (NIPPPV) uses a machine that assists you in breathing. Air is delivered via a mask that fits over the mouth and nose, or via "nasal pillows" that fit comfortably inside your nostrils. Most people with ALS initially use NIPPV at night only, and then progress to daytime use over time. The most common form of NIPPV is called BiPAP, for bi-level positive pressure ventilation. We recommend consideration of NIPPV when your vital capacity falls below 50% of normal.
  • A tracheostomy surgically places a breathing tube into your trachea. The tube is connected to a ventilator that takes over the work of breathing. It is appropriate to consider when NIPPV is no longer providing adequate ventilation. A tracheostomy requires a much higher level of skilled nursing care than NIPPV, and it may interfere with your ability to speak. Our staff will discuss the many issues involved in choosing tracheostomy with you before you come to that decision point.

You can talk with our respiratory therapist about each of these options at any time. It is important to take the time to make decisions about ventilation options, especially the use of a tracheostomy, before they are required.

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Speech

ALS affects the muscles of the throat used for speech and swallowing (called bulbar muscles). In some people, these are affected very early in the disease, while in others, they remain fairly strong until much later. Weakness of these muscles leads to speech that is not as loud or as clearly articulated as you intend. Early on, it may be difficult to speak at length. As the disease progresses, you may find it hard to make yourself understood. Augmented and assistive communication devices are available and provide many people with ALS important tools to remain connected with family and friends. These range from simple alphabet boards to computer-based systems that "speak" words you choose, to systems that track your eye movements over a computer screen to predict word choice. Our speech and swallowing pathologist will discuss the options available and help you learn to use them before you develop the need.

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Swallowing and Nutrition

Swallowing becomes more difficult as ALS progresses. Difficulty swallowing increases the chances of choking on food, or inhaling food, which can cause pneumonia. It also tends to reduce the intake of food, leading to undernutrition. Early on, our speech and swallowing pathologist will teach you exercises and tips to help you retain your swallowing function for as long as possible. Dietary changes may be valuable to make food easier to swallow.

Eventually, you may want to consider using a feeding tube. Called a PEG tube or RIG tube, this tube is placed through your abdominal wall into your stomach, allowing nutrients, liquids, and medicines to be introduced into you gastrointestinal tract directly, without the need to swallow. The tube is quite narrow, and remains unobtrusive underneath your normal clothes. After the tube is placed, you can continue to consume foods and beverages by mouth if you wish to for as long as it is safe to do so. This allows you to enjoy food and drink by mouth without worrying about obtaining adequate nutrition.

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Saliva

You may notice an increase in your saliva as your disease progresses. This is rarely due to excess production; instead, saliva accumulates because you are swallowing less frequently. Early on, you may be able to control this problem simply by remembering to swallow more often. Later, you may benefit from medications that decrease saliva production, and a suction machine that can remove excess saliva from your mouth.

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Mobility

As leg weakness increases, a person with ALS will increasingly rely on a wheelchair for mobility. A manual wheelchair is useful when a caregiver is available for pushing the chair. An electric wheelchair provides more independence without taxing limited strength. There are many different features to consider in the choice of a power chair. A chair that reclines, tilts, and elevates the legs is valuable for preventing pressure sores as you lose the ability to shift easily in the chair. Chairs are available with space for a ventilation machine, if that is needed. The chair should be able to navigate within the home. The home may require some modification for this. You can discuss the many options and decisions with our occupational therapists.

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Anxiety and Depression

Receiving a diagnosis of ALS is a life-altering event. It is entirely natural to experience changes in mood as a consequence. Coping with the diagnosis, especially soon after receiving it, can be challenging, and the loss of abilities throughout the disease process may be hard on even the most resilient person.

Anxiety and depression are more common in people with ALS than in the general population, though they are by no means a universal aspect of the disease. There are medications available to help with these conditions when they arise. But just as important is having the chance to talk about your feelings with a trained therapist who can help you understand them and cope with them. A combination of medication and talk therapy often provides the best outcome.

Family members, especially those who are caregivers, may also experience depression. Support resources for caregivers are available, and represent an important venue for "caring for the caregiver."

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Cognitive and Behavioral Changes

About half of all people with ALS will develop mild behavioral or cognitive impairment as part of their disease process. These changes in behavior, thinking, remembering, and planning are often so mild they are overlooked within the family, and may not interfere with daily life. A smaller group of people with ALS will develop more significant impairment, and some will develop dementia. The symptoms of dementia vary, but most commonly include behavioral changes such as irrationality, apathy, or obsession. Memory loss is much less common than in Alzheimer's disease.

In some cases of ALS, behavioral or cognitive symptoms occur very early in the disease, while in many others, they occur late or not at all. If they do occur, it can be helpful to the family to remember that they are part of the disease process, and not a reflection of the relationships within the family, especially important to remember about behavioral changes. Our psychologist and other members of the team can work with the family to understand these changes and minimize their impact.

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