Individuals with ALS slowly have their muscles get weaker over time. This includes the muscles we use to swallow food and drinks. Learning about these changes early can help people with ALS stay safe and get the nutrition they need.
What Happens to Swallowing in ALS
Swallowing might seem simple, but it actually uses many different muscles working together. When we eat or drink, our tongue pushes food to the back of our mouth. Then muscles in our throat squeeze the food down toward our stomach. At the same time, a small flap called the epiglottis closes over our windpipe to keep food from going into our lungs.
In ALS, the muscles that control swallowing can become weak or stop working properly. This problem is called dysphagia, which means trouble swallowing. When someone has dysphagia, food or liquid might go down the wrong way and end up in their lungs instead of their stomach. This is called aspiration, and it can cause serious lung infections like pneumonia.
The swallowing changes in ALS usually happen slowly. At first, someone might just notice that certain foods feel harder to swallow. They might cough more often during meals or feel like food is getting stuck. As the disease progresses, these problems can get worse and affect both solid foods and liquids.
Some people with ALS notice that thin liquids like water or juice are especially hard to swallow safely. This happens because thin liquids move quickly and can be harder for weakened muscles to control. Thicker foods like pudding or mashed potatoes might feel easier to manage at first.
How Thickened Liquids Help
When swallowing becomes difficult, speech-language pathologists often recommend thickened liquids. These are regular drinks that have been made thicker using special powders or gels. The thicker texture moves more slowly, giving weakened swallowing muscles more time to work properly.
There are different levels of thickness that doctors and therapists use. Nectar-thick liquids are about as thick as heavy cream or eggnog. Honey-thick liquids are thicker, like the consistency of honey. Pudding-thick liquids are the thickest option and feel more like yogurt.
The right thickness level depends on each person's specific swallowing problems. What works for one person with ALS might not work for another. That's why it's important to work with healthcare professionals to find the best option.
Many people find that thickened liquids take some getting used to. They might taste different or feel strange at first. Some people worry about getting enough fluids when drinks are thickened. However, thickened liquids can be a helpful way to stay hydrated safely when thin liquids become dangerous.
There are different ways to thicken liquids. Some people use powder that they mix into their drinks. Others use pre-thickened beverages that are already the right consistency. Some facilities use special machines that can thicken liquids quickly and consistently.
The Role of Speech-Language Pathologists
Speech-language pathologists, often called SLPs, are healthcare professionals who specialize in swallowing and communication problems. They play a crucial role in helping people with ALS manage dysphagia safely.
When someone with ALS starts having swallowing problems, their doctor will often refer them to an SLP for evaluation. The SLP will do several tests to understand exactly what's happening when the person tries to swallow. They might watch the person eat different types of food and drinks to see where problems occur.
One important test is called a swallow study or modified barium swallow. During this test, the person drinks liquids or eats foods mixed with a safe contrast material called barium. Then X-ray machines take pictures of the swallowing process in real time. This helps the SLP see exactly what's happening inside the throat and whether food or liquid is going into the lungs.
Another type of evaluation uses a thin, flexible camera that goes through the nose to look at the throat. This test is called a fiberoptic endoscopic evaluation of swallowing, or FEES. It allows the SLP to see the swallowing muscles directly and check how well they're working.
Based on these evaluations, the SLP can recommend specific strategies to help with safe swallowing. They might suggest certain food textures, head positions during eating, or swallowing techniques. They also monitor how swallowing changes over time and adjust recommendations as needed.
SLPs work closely with other members of the healthcare team, including doctors, dietitians, and nurses. They help coordinate care and make sure everyone understands the person's swallowing needs and safety requirements.
When to Consider a Feeding Tube
As ALS progresses, swallowing problems often get worse despite using thickened liquids and other strategies. When eating and drinking by mouth becomes too dangerous or difficult, doctors might recommend a feeding tube. This is a medical device that delivers nutrition directly to the stomach, bypassing the mouth and throat entirely.
The most common type of feeding tube for people with ALS is called a PEG tube. PEG stands for percutaneous endoscopic gastrostomy. This tube goes through the skin of the belly directly into the stomach. A PEG tube is placed during a minor surgical procedure that usually takes about 30 minutes.
Deciding when to get a PEG tube is an important choice that should be made carefully with the healthcare team. Research has shown that there are certain criteria that can help guide this decision. These evidence-based guidelines help ensure that people get feeding tubes at the right time for the best outcomes.
One important factor is lung function. People with ALS often have breathing problems as well as swallowing problems. If lung function becomes too weak, the surgery to place a PEG tube becomes riskier. That's why doctors often recommend considering a PEG tube before breathing problems become severe.
Weight loss is another important sign. If someone with ALS is losing weight because they can't eat enough safely by mouth, a feeding tube can help them get proper nutrition. Good nutrition is important for maintaining strength and overall health.
The frequency of aspiration events also matters. If someone is frequently getting food or liquid in their lungs despite using thickened liquids and other precautions, a feeding tube might be necessary to prevent dangerous lung infections.
Some people worry that getting a feeding tube means they can never eat by mouth again. However, many people with PEG tubes can still enjoy small amounts of favorite foods by mouth, as long as it's safe. The feeding tube ensures they get proper nutrition while still allowing for the pleasure and social aspects of eating when possible.
Making the Decision Together
The choice about when to consider a feeding tube should always involve the person with ALS, their family, and their healthcare team. It's important to discuss the benefits and risks, as well as personal preferences and goals.
Some people choose to get a PEG tube earlier in their disease progression as a safety measure. Others prefer to wait until eating by mouth becomes more difficult. There's no single right answer, and the decision should be based on each person's individual situation and values.
Healthcare providers can help explain the evidence-based criteria and what they mean for each person's specific case. They can also discuss what life with a feeding tube would be like and answer questions about the procedure and recovery.
Staying Safe and Nourished
Managing swallowing changes in ALS requires ongoing attention and adaptation. Regular evaluations with speech-language pathologists help ensure that strategies remain appropriate as the disease progresses. Working with dietitians can help maintain proper nutrition whether eating by mouth or using a feeding tube.
The most important thing is safety. While it can be difficult to accept changes in eating and swallowing, using appropriate strategies and making timely decisions about feeding tubes can help prevent serious complications like pneumonia. With proper support and planning, people with ALS can continue to receive adequate nutrition throughout their journey with the disease.
Understanding these basics about dysphagia, thickened liquids, professional evaluations, and feeding tube timing can help people with ALS and their families make informed decisions about nutrition and safety. Working closely with healthcare professionals ensures that each person receives care tailored to their specific needs and circumstances.
