Patients with ALS need to maintain nutritional supply by all means

Patients with ALS often suffer from malnutrition, which may be caused by difficulties in swallowing, weakness of limbs and psychological factors of patients that lead to decreased appetite and reduced eating, making energy intake insufficient; the disease leads to higher metabolic rate and higher energy consumption of the body. Malnutrition can accelerate the progression of the patient’s disease, therefore, enhanced nutritional support is particularly important in the treatment of ALS patients. When the patient’s medullary muscles are involved, it will cause difficulty in swallowing, choking and coughing on drinking water, and many patients will have salivation and runny nose. When ALS patients have chewing and swallowing problems, recipes should be changed. Patients are advised to eat less frequent meals, eat soft foods (such as rotten rice and rice paste), non-fluid foods (such as avoiding soup, as eating liquids can easily cause choking and coughing), use thickeners to make liquids into a paste if necessary to increase water intake, and avoid irritating foods. Choose a suitable position to eat, eating should be small, slow, to avoid food accidentally aspirated into the lungs to cause asphyxia or pneumonia, and keep sitting for half an hour after eating to avoid food reflux, choking and coughing. Patients who have the conditions can receive appropriate rehabilitation treatment such as swallowing training, which can alleviate the symptoms of dysphagia and salivation to a certain extent, please consult the rehabilitation physician for details. Patients suffering from salivation symptoms should pay attention to adjusting the position of the head (salivation is aggravated when the head is low, and tilting the head when swallowing is difficult is likely to cause choking and coughing), and consciously exercise to close the mouth with certain strength, which can help control salivation to a certain extent. Patients with runny nose can use hot water steam to fumigate the nose to reduce the symptoms. When all of the above measures fail to ensure that the patient receives adequate nutrition, and the patient develops progressive swallowing difficulties, accelerated weight loss, dehydration, and choking leading to premature cessation of meals, a nutrition supply device should be used as soon as possible to artificially supplement the patient with adequate nutrition. Nasal feeding tubes are usually used to provide nutritional support for 2-3 weeks and cause nasopharyngeal irritation, discomfort, and reflux and aspiration. For ALS patients who require long-term manual supplementation, we recommend the more convenient and safer gastrostomy tube. Percutaneous endoscopic gastrostomy (PEG), which refers to the placement of a gastrostomy tube via percutaneous puncture in the patient’s upper abdomen under gastroscopic guidance, allows the injection of food and water through the gastrostomy tube, thus enabling nutritional supplementation and ensuring adequate energy and fluid intake, which is useful for prolonging the survival and improving the quality of life of ALS patients. In addition, PEG itself is relatively simple, risky and invasive, and experienced physicians can control the risk to a very low probability. Percutaneous endoscopic gastrostomy is performed by a specialized gastroenterology endoscopist. Since dysphagia in ALS patients is usually accompanied by decreased respiratory function, the risk of performing PEG increases when respiratory function decreases, so we recommend that patients with progressive dysphagia undergo the procedure as soon as possible. Many patients and their families are afraid of the operation, mistakenly believing that PEG will bring great inconvenience to their future life. In fact, after PEG, patients can not only retain their existing ability to swallow and speak, but also continue to eat through the mouth, and do not prevent exercise and bathing, and wear clothes when going out without affecting their appearance because of the abdominal fistula. Moreover, due to the nutritional status, it helps a lot to maintain the above daily living abilities. Regarding the postoperative care of the gastrostomy, the family needs to pay attention to the injection of water after each feeding through the fistula to avoid blockage of the fistula; to keep the fistula clean and dry to avoid infection of the fistula; and to observe whether the fistula is displaced. If the fistula is red, swollen, painful, fluid leaking and other symptoms of infection, go to the hospital as soon as possible and get anti-infection and local medication changes.