Amyotrophic lateral sclerosis (ALS) is a rare neurological disease that is characterized by loss of motor neurons, which are nerve cells that control voluntary muscle movement.
As the disease progresses, most patients will develop bulbar symptoms, which are symptoms that affect muscles responsible for swallowing, chewing and speaking.
One of the major issues in patients with bulbar symptoms is the risk of choking. During swallowing, over 26 pairs of muscles and 5 different nerves need to coordinate and move for a piece of food or liquid to be correctly swallowed. When some of them don’t coordinate, as in the case of patients with ALS, then patients can choke.
At the disease progresses, it is important for patients and their caregivers to employ strategies that can help patients eat safely and in a manner that prevents choking and malnutrition. Here are some strategies that can help:
- Modify the consistency of food. Changing the consistency of the food or liquid to a more appropriate texture will help reduce the energy that is needed to chew and swallow. By saving energy during eating, the patient will also have more energy throughout the day.
- Eat food that requires minimal chewing, such as soft foods like pudding.
- Moistening solid food with liquids, such as sauces and gravies, can help reduce the energy that is spent chewing. This can also stop the sensation of “food sticking” or the feeling that there is food residue stuck in the throat, which can cause patients to swallow unnecessarily.
- Take smaller bites of food and fewer sips of liquid, as that makes it easier to control the foods as you swallow them.
- Alternating bites of food with sips of liquid can help push food through the throat and into the stomach.
- Medications can be crushed or taken with some yogurt or pudding or given in liquid form if they become difficult to swallow.
- Patients can undergo a Modified Barium Swallow study, which is a test that helps determine how well a patient can swallow. Results of this test can help figure out the safest diet consistency and swallowing recommendations for each individual patient.
- Using thickening agents or thickeners to make regular liquids thicker can help slow down the rate at which a liquid is being swallowed. By adding thickening agents, it gives the swallowing muscles greater time to coordinate and protects food from going down the airway. Thickeners can come either as a powder or gel form and can be added to several drinks to make them safer and easier to control. Some common brands include Nestle® Resource Thicken Up, Simply Thick, and Thick-It.
- Use a mechanical blender to soften foods that are difficult to chew and require a lot of energy for chewing such as breads, meats, raw fruits, and vegetables.
- Performing a chin tuck can help patients swallow easier and it stops the food from going down the windpipe.
- To minimize fatigue during large meals, it is better to instead prepare small, easy snacks throughout the day. Overall, it is better to take smaller, more frequent meals throughout the day.
- As many patients with ALS will experience weight loss, adding high calorie foods to the diet such as peanut butter can help. Drinking full cream milk smoothies or shakes can also help maintain weight.
- In order to help ALS patients better enjoy their food, caregivers can add spices and sauces to increase the taste and texture of their food. Increasing the temperature of the food can also help bring out flavors.
- Minimizing other activities during a meal such as side conversations and other distractions can help the patient feel less fatigue during the meal.
- To further lower eating-related fatigue, caregivers can arrange the food plate to be on the same plane as the mouth so that there is less movement between reaching for the food and lifting it to the mouth. This can be done by either changing the setting on the chair or by stacking phone books or a plastic tub to elevate place setting.
- Occupational therapists can help recommend different products that can be used for increasing efficiency of eating and drinking to reduce fatigue. Some of their products include plate guards and modified utensils.
- Staying hydrated is necessary and often an issue in patients with ALS. Therefore, products such as Nosey Cup, Dual Cup, Provale Cup and Sip and Tip have all been designed to help patients drink liquids in a way that there is a lower chance of the liquid entering the windpipe.
- Another strategy to stay hydrated is to eat foods that have a high percentage of water including canned and fresh fruit, vegetables and vegetable juice, nectars, smoothies, cream soups, drinkable yogurt, and purees in ice trays.
- Installing a feeding tube can be a great option for patients that are advanced in their disease and have a particularly difficult time swallowing. Furthermore, a feeding tube can actually be used as an additional source of nutritional intake while still maintaining oral intake. Using a feeding tube is actually a very good way of ensuring adequate nutritional needs are met. There are two different types of feeding tubes, a Percutaneous Endoscopic Gastrostomy (PEG) or a Radiologically Inserted Gastrostomy (RIG).