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The ability to eat properly is a serious problem for patients with amyotrophic lateral sclerosis (ALS). In fact, the growing inability to swallow, or dysphagia, exacerbates the difficulties in managing an already complex and serious disease. But scientific research, with the collaboration of chefs, strives to find solutions that guarantee the correct supply of nutrients to patients, without neglecting the social and relational aspect of nutrition.
These topics were discussed in recent days at the conference “ALS: Metabolism and Nutrition. New frontiers in taking charge”, held at the University of Gastronomic Sciences of Pollenzo (Cuneo), and organized by the Italian Amyotrophic Lateral Sclerosis Association (Aisla), the Nemo Clinical Centers and SLafood, the association promoted by Aisla in 2023 to address the food problems of people with ALS from a scientific and gastronomic point of view together.
The event, under the aegis of Slow Food, was welcomed by the Piedmont Region Health Councilor, Federico Riboldi, and the head of anti-discrimination, disability and social inclusion policies of the University of Pollenzo, and delegate of the rector , Maria Giovanna Onorati.
About seventy students participated (dietitians from the Nemo Centers, neurologists, but also specialists from the University of Pollenzo) and some chefs (Roberto Carcangiu, vice president of SLAfood, Cristian Benvenuto, Elio Sironi, Roberto Valbuzzi, Fabio Zanetello), who gave demonstrations practices of culinary preparations based on the nutritional indications emerging from the scientists’ reports.
«The new scientific objectives are increasingly aimed at the interaction between metabolism and nutrition, both to delve deeper into the causes of the disease and to improve clinical practice – explains Federica Cerri, neurologist, ALS Area representative of the Nemo Center in Milan and scientific coordinator of the conference – The focus is on the standards of care for the management of dysphagia, the methods of evaluation and prediction of nutritional status, in order to allow the development of nutritional plans “tailored” to each person’s history of illness”.
Dysphagia is «a very important obstacle for nutrition, but also for hydration – observes Giorgio Calabrese, nutritionist and expert of the medical-scientific commission of Aisla –. For this reason, multidisciplinary work must produce recipes with modified consistencies, balancing all the nutrients necessary for the needs required by the disease, without forgetting the important social function and emotional and psychological satisfaction of food.” Taking the side of the patient who is unable to swallow, Calabrese continues, one must «have something velvety, soft but not too liquid and not too solid, foods that must be harmonized with each other in their softness».
Davide Rafanelli, an entrepreneur in the food sector who has been suffering from ALS for some years, is the president of SLAfood: «I experience firsthand what it means to be forced to give up a good meal eaten together with your loved ones» he says. Hence the call for “team play to preserve everyone’s desire to enjoy the daily joys of life. It’s true, ALS is a “thief of taste”, but it cannot deprive us of the beauty and emotion of living in the present.”
Science has taught that dysphagia «is an integral part of the pathology and as such it also becomes an objective of treatment – points out Federica Cerri –, therefore management must be early. We must work to find biomarkers that allow us to predict the nutritional progress of patients, precisely to be able to anticipate this problem in ALS, to act early, in advance and to be able to treat this element to also be effective in modifying the natural history of the disease. these patients.”
ALS has so far lacked a real therapy: «As an association – underlines Fulvia Massimelli, national president of Aisla – we must know how to take care of ourselves, guarantee a quality of life that can fill the time that science gives us with meaning». «There was once talk of the inevitable progression of the disease. Today – concludes Massimelli – of the inevitable progress of science”
