In the province of Valladolid, almost a quarter of patients with amyotrophic lateral sclerosis (ALS) in Castile and León They found this neurodegenerative disease an unexpected problem in their lives. Lola Villanueva, a brave woman, shares her experience with us.
“When I walked, I was not very mobile, and my legs were trembling,” recalls Lola, who was 60 years old when the first signs of the disease became apparent. At first, she and her doctor thought it could be the effects of Covid-19, but the symptoms worsened, and it became clear that there was something else. “I fell, my tongue atrophied, I began to notice strange things”describes the victims.
The data on ALS is shocking: almost 4,000 people suffer from this disease in Spain, the third most common neurodegenerative disease, after Alzheimer’s and Parkinson’s. ALS causes deterioration of the motor neurons responsible for voluntary muscle movement, over time these neurons stop working and die. The main victims of ALS are motor autonomy, oral communication, swallowing, and even breathing, which affects basic functions such as walking, speaking, swallowing, or getting out of bed. It’s a cruel disease for it does not corrupt the mind, leaving aspects such as intellect or memory untouched.
The average life expectancy after diagnosis is approximately four years. but Lola reminds us that proper medical care and treatment can be crucial: “I’m doing everything I can to treat this disease,” she says emphatically. “Thanks to psychological help, rehabilitation and the support of family and friends, I find the strength to fight this disease.”
Despite the courage of those affected, one has to face the reality: the absence of a specific law that meets the needs of people with ALS. The so-called “ELA Act”, introduced over a year ago by the Ciudadanos party, aims to guarantee the right to a decent life for ALS patients. However the continuous extension of the deadlines for the submission of amendments has caused frustration and uncertainty among those concerned.
“They don’t pay attention because we are a minority, they don’t care about the votes they can get for this, that’s why they leave us in the parking lot,” Lola says in her account paralysis claims. And firmly adds: “I think that what I am about to tell you will be very difficult. I would like them to have a close relative for two months so they can see what the disease is and then take action.”
The ELA was intended to drastically reduce the time it takes for ALS patients to be recognized as disabled, in addition to provide basic services such as travel and physical therapy, home care, and a social bonus to offset the cost of a respirator.
Lola Villanueva and everyone who suffers from ALS I hope that this law will finally be passed and justice will be done to those who tirelessly fight this cruel disease. Meanwhile, every day is a test for Lola and other patients, but her strength, determination and the support of her loved ones remain her greatest strength to face ALS with courage and hope.