ALS and Dysphagia, the ‘Flavours, Links, Autonomy’ Recipes to Find Taste Again

Three out of four people with amyotrophic lateral sclerosis (ALS) suffer from dysphagia. This difficulty swallowing makes meals very tiring (66%), takes away the appetite (53%) and the desire to eat in company (66%). This is the picture taken by the survey of Italian patients with ALS conducted by Iqvia Italia, on the daily difficulties related to eating, in addition to the psychological and social impact of dysphagia. This is how ‘Flavours. Links. Autonomy’ was born, a selection of recipes promoted by Aisla (Italian Association of Amyotrophic Lateral Sclerosis) Slafood and Zambon Italia. The special menu, available on the Slafood website, on the occasion of National ALS Day, celebrated on 14 and 15 September, was designed specifically for patients and caregivers by chefs Cristian Benvenuto, Roberto Carcangiu and Roberto Valbuzzi, with the scientific supervision of the Milan headquarters of the Nemo Clinical Centres. From the parmigiana with a modified consistency to the fresh combination of shrimp and melon, passing through the carrot cream and kefir sauce, the selection of 3 recipes aims to give back to the 6 thousand Italian patients the joy of sharing a meal with their family.

Dysphagia – as stated in a note – tends to appear in the early stages of the disease – 38% of patients suffer from it in the first year – and gradually worsens over time (53%). It ends up having a strong psychological and social impact: it fuels pessimism and mistrust (69%), makes you feel tired and lacking in energy (53%), also erasing the convivial value of food. “After the diagnosis – says Davide Rafanelli, president of Slafood and National Councilor of Aisla Aps – I experienced first-hand what it means to be forced to give up a good meal eaten together with your loved ones. So I decided to put my culinary skills at the service of the entire Italian ALS community and to work together with some of the most talented chefs in our country to create recipes with modified consistencies, specific for people with ALS. This is also how this special menu was born: three dishes, easy and safe to make, which aim to help patients rediscover the joy of eating in company and fully enjoy every moment of their day”.

After all, “the value of food – adds Roberto Valbuzzi, Chef patron of Crotto Valtellina – is not only linked to taste, but also to what it symbolizes from a social and cultural point of view: let’s think, for example, of the meaning that Sunday lunch has in Italy, together with one’s family or the holiday dinner. Thus, these recipes aim to help people with ALS to preserve – thanks to good cooking – the bonds with their loved ones and therefore also the social dimension of life”.

It’s a balancing act. “When we are called upon to identify the most correct diet for a person with ALS – explains Giorgio Calabrese, professor of Human Food and Nutrition at the University of Eastern Piedmont and member of the Scientific Medical Commission of Aisla – we come up against several obstacles: we must balance all the nutrients necessary for the human body, analyze the metabolism, the hormonal component and the neuromuscular capacity, without forgetting the social and satisfaction aspect of food. In fact, a correct and, at the same time, inviting diet can improve the quality of life of patients, helping to maintain good muscle strength, prevent dehydration and malnutrition”.

The selection of recipes ‘Flavours. Bonds. Autonomy’ represents only the first stage of a path promoted by the Nemo Clinical Centre of Milan in collaboration with Aisla and Slafood to raise the spotlight on the importance of nutritional management in ALS. “The clinical experience with ALS – underlines Federica Cerri, neurologist, ALS area contact at the Nemo Centre of Milan and member of the Scientific Medical Commission of Aisla – tells us how nutrition is increasingly one of the crucial aspects in managing the progression of the disease. For this reason, with Slafood and Aisla, we have started a dedicated path, which is based on clinical evidence, and which will materialize in the coming months in a training event for operators in the sector and caregivers organized in partnership with the University of Gastronomic Sciences of Pollenzo which will lead to a practical manual on ALS and nutrition”.

Amyotrophic Lateral Sclerosis is a rare and progressive neurodegenerative disease that leads to loss of muscle strength and muscle blockage, without impacting cognitive and sensory functions2. “ALS turns the life of the person and their family upside down – underlines Rossella Balsamo, Medical Affairs & Regulatory Zambon Italy and Switzerland – In addition to the physical consequences, there is also the gradual loss of autonomy and opportunities for socialising. In line with our vision ‘Innovating cure & care to make patients’ lives better’, we want to improve patients’ lives through scientific innovation, but also with tools capable of responding to their psycho-social needs. On this basis, we have decided to support the dissemination of this menu that aims to help people with ALS not to give up the pleasure of flavours, to benefit from conviviality and to feel – she concludes – more autonomous in everyday life”.