“In 25 years, stroke rates will increase by 30 percent.”
And before and after. Here’s what this means for people suffering from sudden traumatic brain injury (SBI). National Brain Disease Day is celebrated on October 26 under the theme “To effectively ensure continuity of care for people with acquired brain lesions and their families.”
A disorder resulting from nondegenerative or congenital brain damage due to external physical force or internal cause.
The reasons are varied and different for each person. Some causes are traumatic brain injury, tumor, infectious disease, epilepsy… or stroke. The latter is one of the most common factors leading to this disease.
The president of the Association of Sudden Traumatic Brain Injury of Castile-La Mancha (Adace), Ana Cabellos, assures that due to stroke alone in Spain there are about 120,000 new cases per year, “very high” figures. By comparison, there are 36,000 cases of breast cancer reported each year. Data that highlights a problem that affects thousands of people in Spain.
As a rule, the age of these patients is already advanced, but recently it has been noted that in young people 18 or 20 years old, even in infants, cases associated with brain damage have been observed. In this sense, the President of Adace emphasizes that this disease is “the leading cause of acquired disability in Spain” and, according to studies by the World Health Organization, the number of cases will increase in the coming years (WHO): “In 25 years, the number of stroke cases will increase by 30 %,” Cabellos says.
The President warns that although stroke has a “preventable part”, its occurrence depends on several factors, such as a “harmful” lifestyle, so “in a large percentage of cases it cannot be prevented, but there are all the casuistries of life that force it cannot be prevented.”
Although this is a chronic disease, the president emphasizes that the prognosis will be better if victims receive “good” neurorehabilitation from the very beginning.
Improving care requires the availability of the necessary funds to do so, and Adache denounces the “significant” lack of resources, which is why they are calling for increased economic investment.
Another demand is the expansion of places at the Institute of Neurological Diseases of Guadalajara, since the current 22 places are considered “insufficient” for a brain-damaged population of more than 20,000 people and with about 6,000 new cases of stroke every year.
They also request a diagnosis code for traumatic brain injury upon hospital discharge, which, among other things, identifies the person suffering from this disability.
Adace has a center in Cuenca, located on Calle Princesa Zaida, where they serve users from the capital and provinces.
To ensure that all victims learn to live with this disease, the Association for Sudden Brain Injury (Adace), a non-profit organization that has been helping families and patients with sudden brain injury since 2002, was created.
In Castile-La Mancha, Cabellos reports that in 2023, 1,232 people took advantage of the services they offer, an increase of 11.6% compared to the previous year; 623 people suffered from stroke and 610 members of their families. However, he regrets that “unfortunately” some centers have a waiting list to meet demand as they cannot “supply”. Additionally, they have 101 volunteers who selflessly help the association.
In Cuenca they have their center located on Calle Princesa Zaida where, as of 2023, they have 14 volunteers who have assisted 63 family members and registered 130 users, of which 67 had DCS.
Angel Pasarol Moreno, 65, is an Adace user who suffers from hemiparesis of this association, and Evelyn Gonzalez Martinez is the wife of the organization’s beneficiary.
first person
Patients like 65-year-old Angel Pasarol Moreno come to the center every day. A user who two years ago suffered two strokes almost in a row and found a place in Adach where he could experience his new life. “I couldn’t stay home alone, I couldn’t do anything, and since I came here I’ve been getting better little by little.”
The effects of this disease led to hemiparesis, and Pasarol notes that he lost many of his habits. It was difficult for him to engage in social activities and work, so he is now retired, having devoted several years to construction. The days he goes to this center are Monday and Wednesday with Adace workers, where he does memory and math exercises.
For him, the workers and patients of this center are like his family. Lucia Espinoza García, an occupational therapist at Adace Cuenca, explains that she found it “very difficult” to organize things. They helped him at home, where he lives alone, by putting glasses or T-shirts under his arm.
The consumers they currently serve come from the hospital in the acute phase, and although they were born with the purpose of providing this care after the fact, they do not intend or want to replace healthcare, as Celia Bueno, the social network, assures. association worker.
The center also explains the importance of considering “invisible” consequences, such as problems with memory, attention and behavior. Situations faced by both patients and their families.
Evelyn Gonzalez Martinez is the wife of a person who suffered sudden traumatic brain injury, also caused by a stroke. Her husband Jose was 47 years old when he began this fight more than a decade ago. Since then, he had to relearn how to speak and even “lose” his feelings.
They met Adase through the Center for Neurological Diseases of Guadalajara, and together with her husband, Gonzalez had to learn to understand him. A “very difficult” situation that “destroyed” them as a whole family, because when they started to move forward physically, cognitively, “they did very strange things.”
She is grateful for the help the association has given her because the hospital, although they save lives, “doesn’t tell you what you’re taking home.” Gonzalez says you will cease to exist as a couple and become a guardian. He recalls that Antonio Molina’s song “Cook the Chef” was the first time he recognized his family.
The struggle is hard, but finding understanding from others is also difficult. For this reason, the Association proposed holding a family master class on creating a space where loved ones will have a reason to feel supported.
The experience changed Gonzalez’s life so much that she plans to volunteer to give back all the help she received, because without the association’s workers, her husband would not be half as healthy as he is now.
Their only requirement in this regard is to demand more cognitive information from families. Likewise, ask the people around the affected person to listen and allow themselves to help, because if you do, “you will improve your quality of life.”
For his part, Pasarol asks victims “not to lock themselves in their houses and not to go out into the streets to ask for help,” because there is support from people like Adache.
