live with Amyotrophic lateral sclerosis (ALS) This assumes that your body will gradually stop responding as you wish, and that a decline in health does not have to be related to a decline in attitude. Most patients … of ALS, which advocates the fight to highlight the disease so that governments do not turn a blind eye, welcomes initiatives such as those carried out by ELA Andalusia with Pilot project “Personal assistant for people with amyotrophic lateral sclerosis”an eight-month program that significantly improves the independence and quality of life of patients and their families.
Data from this project, funded by Next Generation Funds, was implemented Between March and October 2025reflects that the ten patients from the province of Seville (41 in Andalusia) who completed it were able to Maintain physical conditionDespite the natural progression of this disease. But the real milestone of this project is in 96% increase in social relationshipsAnd enhancing the active presence of people with amyotrophic lateral sclerosis in their social and community circle, in addition to the importance of support to avoid isolation.
“He helped me a lot. It was a gift For patients with amyotrophic lateral sclerosis. At the beginning of the disease, I had a very bad time, but then you start to become resilient and accept your life, but of course, you want to continue to be what you were, to continue doing your activities, going and going, having friends… Having my personal assistant for these eight months. You gave me life“It gave me joy, independence and a lot of security to be able to make decisions without relying on my family.” Maria Luisa Pereza 54-year-old ALS patient.
Maria Luisa Pérez, in the courtyard of her home in Seville
These personal assistants contribute to greater independence and provide a break for a family that works hard, but also needs a break from its obligations. The project favored more balanced family dynamics, restoring emotional and natural roles within the home. «It was a gift. Thanks to ELA and this project, I feel like myself again.“Without having to balance my schedules with my children and husband,” says Maria Luisa, who admits with a heavy heart that the only place she has not gone during this period is school. TartessusWhere she worked as an early childhood education teacher: “I feel very happy when I see my children.”
“The only place I couldn’t go back to was the school where I was working; “I feel so happy when I see my children.”
Maria Luisa Perez
A 54-year-old amyotrophic lateral sclerosis patient
Adherence to amyotrophic lateral sclerosis
ELA Andalucía takes advantage of this experimental experience to Request the strengthening and expansion of personal assistance in Andalusia As a stable resource within the law of dependency. “Until I stay tied to a machine that God wants, it will take a long time. I have the desire to live, to do things, and this kind of project helps a lot with that. “I want to enjoy my time as a mother with my children, not as a caregiver, because I know that they do it from the heart,” says María Luisa, who is aware of what she has, but also of how she lives it. «This disease is getting worse, I know I will not get better, but no matter how much time I have, I face it with enthusiasm and a desire to do things.. I was very lucky to have a very happy girl, who did not look at me with pity or as a sick person, quite the opposite. “He made me feel good, he complemented me and it enriches me so much,” he thanked him.
“I know that this disease is getting worse and is not getting better, but no matter how much time I have, I face it with enthusiasm and a desire to do things.”
Maria Luis Perez
A 54-year-old amyotrophic lateral sclerosis patient
Carlos Barrera, who has been suffering from amyotrophic lateral sclerosis for three years and is 69 years old, is grateful for the invaluable work of his personal assistant, also showing his gratitude. “It was a very good experience because in addition to that We need someone to be with us a few hours a day “To continue doing more or less what we did before the illness,” says the former actor, whose speech has already become difficult due to the illness.
“We need someone to be with us and allow us to do more or less than we did before the illness.”
Carlos Barrera
A 69-year-old amyotrophic lateral sclerosis patient
Carlos, who is 69 years old, maintains his desire to live healthy, and seeks that this type of news contribute to helping this category of patients, who It increases by approximately three per day, according to data from the Spanish Society of Neurology. “I hope that this type of project will spread both in Andalusia and in Spain, because it is necessary to comply with the law – the ELA – that was approved in October last year,” says Carlos.