“The value of food for a person diagnosed with Amyotrophic Lateral Sclerosis (ALS) is very high, and this is why we are committed to providing a strong response to the problem of nutrition” and to creating a path to “continue to enjoy life” and “savour it”. This is how Davide Rafanelli, president and founder of Slafood and National Councillor of the Italian Amyotrophic Lateral Sclerosis Association (AISLA), explains to Adnkronos the reason for the project ‘Flavours. Bonds. Autonomy’, a selection of recipes promoted by Aisla, Slafood and Zambon Italia with the scientific collaboration of the Nemo Clinical Centres. The initiative, which gives a new meaning to the acronym ALS, sees the commitment of some of the chefs who collaborate with Slafood to make “pleasant” the diet “compromised by the problem of dysphagia”, which affects up to 3 out of 4 people with this rare and progressive neurodegenerative disease.
“Meals are not just a matter of “survival”, but of “sharing life with the people dear to me – observes Rafanelli – Eating, sitting at the table, participating in the convivial moment is very important in our life. We should always dedicate the right amount of time to it, because it is a moment in which there is a deep sharing, an exchange, even of emotions. Normalizing this moment for those with ALS, “means continuing the life project”. The difficulty in swallowing, a progressive problem of the disease, compromises “the ability to taste”. For this reason it becomes “very important to give the dysphagic person the tools to be able to continue to enjoy dishes that have suitable consistencies, but that still contain the love, taste and colors of good cooking”. Therefore “the plating is important, the raw material is important – lists Rafanelli – and the taste is important. The project seeks to give these tools to the dysphagic to be able to have a correct life both in nutrition, but above all in the relational relationship at the table, which avoids “isolation and which, on a psychological level, allows you to still feel at the center of a project. Nutrition ensures that the life path is a complete life path”.
So “the word ALS, which is an impactful and depriving disease, if we decline it in another way, we transform pain into love”. ALS also becomes an acronym for “Flavours. Bonds. Autonomy”, as in the title of this menu. The disease “is not always a path of tragedy or sadness – Rafanelli clarifies – Let’s try to see it also as a path of growth, of change made together, through flavours, with these strong bonds with the land, with products, with one’s own recipes from the past. And then there is a very important word, which is autonomy, precisely what is missing in an ALS patient”.
The disease in fact affects the patient “in his movements, he is deprived of his autonomy. But even in this case – he points out – through family ties, flavors and the possibility of eating products that have a suitable consistency, the concept of autonomy is recovered. This is the ability to still be at the center of life, it is a booster that gives great hope because you have the awareness that, even in illness, you can continue to move forward” through the daily routine of simple gestures such as “continuing to eat” independently. “There is no better gesture to give a sick person the opportunity to savor his body, to strengthen the taste of life”.
The project, however, looks to the future and, if “today, probably, it will give a little help to us, it will give a huge help to those who come after us – underlines Rafanelli – We are trying to change the history of this disease. This change can be made by all remaining very united and starting from small examples and small efforts such as starting to make a person who is deprived of this possibility eat well. Such a simple gesture is amplified in an incredible way in the mind of those who have ALS: they feel less and less alone, more part of a life project that”, while “on the one hand ALS tries to take you away”, on the other hand, instead, takes a new path with “us who continue to feed the awareness that pain, if we want, we can always transform it into love. Life is beautiful, despite everything. There is always a reason, if you want to look for it, to rejoice in life. I – he concludes – find it every day”.
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