Up to this day, there is no definitive treatment found yet for ALS (amyotrophic lateral sclerosis). What causes the disease is not known also, but the symptoms of progressive muscle wasting are very evident. The person suffers from speech and swallowing difficulties, problems with mobility and trouble breathing. With the worsening of symptoms and discomfort in eating, doctors orient caregivers on the importance of the kinds of food they should give the patient.
Some research shows that choosing nutritious food could make the progression of the disease much slower. Favoring fruits and vegetables on one’s plate is better than the steak served for dinner. With the possibility of choking, considering diet is essential for patients with ALS.
Nourishment can be a predicting factor for the patient’s survival. Risk of death is increased if he turns out to be undernourished. Malnourishment can be brought by the patient’s inability to prepare his own food and eat adequately due to difficulty in swallowing. Sometimes, the patient’s breathing difficulty, infections, and the mental stress brought by the disease cause the patient to lose his appetite, contributing to malnourishment. “The consequences of malnutrition in patients with ALS are well known. Inadequate dietary intake can exacerbate catabolism and atrophy of respiratory muscles, weaken the immune system and contribute to infection,” Jeffrey Rosenfeld, PhD. and co-author note.
“To prevent malnutrition, early detection of eating difficulty is important.” Coryn Commare, MS. She adds, “It is also important to do a brief dietary recall or intake history to detect nutrient deficiencies. Assessments should include how long it takes patients to finish a meal, chewing or swallowing difficulty, and whether they are choking or coughing on liquids or foods, which could be signs of dysphagia.”
When a patient is experiencing dysphagia and breathing difficulty, making him eat is a challenge. His doctor, dietitian, and therapist work together in order to orient the caregiver regarding the more appropriate food that will suit the patient’s nutritional needs, taking into consideration the pain he is experiencing. Eating can cause too much discomfort in patients with ALS.
Maintaining a healthy body weight is essential in order to support the body’s functioning and strength. But when weight loss occurs due to loss of appetite, the possibility of nutrient deficiency may be detected. To avoid swallowing discomfort and choking, soft and easy to eat foods can be considered as long as they still have the nutrients needed by the body.
Keeping the patient well hydrated is another challenge for the doctor and dietitian. Swallowing fluids can also be difficult, especially if they find it hard to drink safely. Chin tuck and the appropriate position of the head can make swallowing safer and could prevent the patient from getting choked. It is often recommended to have thicker liquids as they are easier to take than the usual liquids. But the dry and hard solid foods must be moistened before being consumed to have a smoother consistency. The caregiver can use gravy, oils, sauces, or butter to make the solid food much more comfortable to swallow.
It may take a longer time for ALS patients to eat. That’s fine. In fact, they need to concentrate on their chewing and swallowing to make sure they are doing it correctly and safely. For them, eating is not often satisfying because of the unpleasant pain and the worry they feel that they may choke at any time.
Patients with ALS and their caregivers are made aware of the possibility of doing percutaneous endoscopic gastrostomy or PEG tube feeding. Some patients decline the idea of tube feeding at first but will have a change of mind as their health deteriorates. The PEG tube will provide the patients with the optimal nutrition they need. Fluid intake and medication delivery can also be done through the PEG.
With the PEG feeding, there is less risk of choking and food aspiration, and less discomfort caused by dysphagia.
“Timing is crucial for placement of feeding tubes in ALS patients,” Amy Tsou, MD said. “We’ve shown that waiting too long can be detrimental and happens too often. In general, it is important for clinicians and patients to proactively prepare and reevaluate treatment decisions as ALS patients enter into different phases of the disease.”
Adequate fluid intake and proper nutrition are essential for patients with ALS, even those in the terminal stage. Appropriate feeding regimen that fits the patient’s needs, capabilities, daily routines, and health status should be considered to improve the patient’s quality of life.
The family members’ minds are put to ease, and the burden brought by worries and stress is lessened as the patient’s survival increases with the improvement in nutrition.