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SWALLOWING

Why does swallowing become difficult for patients with ALS?
What are the consequences of swallowing impairment in ALS?
What can I do if I have begun to have difficulty swallowing?
When should I consider getting a feeding tube?
Are there different types of feeding tubes?
If I have the PEG tube, can I still eat by mouth?
How are medications given through the feeding tube?
How can I avoid food getting trapped in my mouth?
What are the treatment options for excess saliva?

 

Why does swallowing become difficult for patients with ALS?

Swallowing is a complex process that involves many nerves and muscles in the tongue, mouth and throat. These nerves and muscles must function in a coordinated fashion to propel food from the mouth down into the stomach, while preventing it from being inhaled into the lungs. Weakness of the tongue, mouth and throat muscles impairs this process. Chewing may become impaired, it may be difficult to move food around the mouth, and food may go down the windpipe with choking and coughing when swallowing. Weakness of the breathing muscles may also affect swallowing as it becomes difficult to coordinate breathing and swallowing.

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What are the consequences of swallowing impairment in ALS?

When swallowing becomes difficult and it takes longer and longer to get through a meal, the intake of food (nutrition) and liquids (hydration) diminishes. This may result in weight loss, malnutrition and dehydration. Dehydration may lead to viscous (thick) secretions and exacerbate constipation. Impaired swallowing also increases the risk of aspiration – breathing food or liquid into the lungs. This can lead to pneumonia, which, when coupled with a weak cough and weak breathing muscles, may be especially serious and perhaps even life-threatening.

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What can I do if I have begun to have difficulty swallowing?

You should discuss these symptoms with your neurologist and other members of the multi-disciplinary team. Caloric intake can sometimes be maintained by eating smaller quantities of food, but at more regular intervals. If this doesn’t help, then it may be necessary to alter the consistency and texture of your foods (e.g. puree). Difficulty swallowing liquids may be improved by thickening the consistency of the liquids. Caloric supplements and vitamins may be added if weight loss occurs continues.

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When should I consider getting a feeding tube?

This is an important discussion to have with your neurologist and multi-disciplinary care team when you attend the ALS clinic. Broadly speaking, a feeding tube is needed when nutrition and hydration are insufficient, when you are excessively losing weight, and when you have difficulty swallowing and experience episodes of coughing and choking. In general, it is better to have a feeding tube placed before your breathing muscles become too weak. In accordance with published guidelines, we recommend having a feeding tube placed before the vital capacity (a measure of breathing muscle strength) falls below 50%.

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Are there different types of feeding tubes?

The proper placement of a feeding tube can be accomplished in one of two ways. A PEG (percutaneous endoscopic gastrostomy) tube is placed using an endoscope, a tiny camera that is inserted into your stomach via your mouth. This requires conscious sedation, which may not be advisable for all ALS patients. A RIG (radiologically inserted gastrostomy) tube is placed using an x-ray of your stomach, after you swallow a harmless solution of barium, which is highly visible on the x-ray. This procedure does not require sedation.

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If I have the PEG tube, can I still eat by mouth?

By the time a feeding tube is placed eating by mouth has typically become a lengthy, unpleasant chore and our experience is that most patients are happy to give it up. However, if you have a feeding tube placed early, you may still eat and drink by mouth, enjoying the taste and experience. The tube can be used, as needed, for extra fluids and calories.

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How are medications given through the feeding tube?

Although it is always a good idea to consult your doctor, most medications can be given safely following some simple rules:

  1. Use liquid medication whenever possible
  2. If a tablet must be crushed, be sure to crush it into a fine powder and mix it well in warm water.
  3. Clear the feeding tube by flushing it with 20-30 ml of warm water both before and after giving the medication.

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How can I avoid food getting trapped in my mouth?

As you develop weakness of your tongue, it may become difficult to clear food from pockets in our mouth or from between your teeth. This may lead to overgrowth of harmful bacteria. A portable suction unit can be very helpful in dealing with this problem.

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What are the treatment options for excess saliva?

Treatment options include use of a portable suction machine, decongestants and over-the-counter medications for colds and allergies, some anti-depressant medications (e.g. amitriptyline), and anticholinergic drugs. You should discuss these various options with your neurologist.

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