Jose Antonio Garcia, suffering from Alzheimer’s disease: “Understanding that it was a big event, but 10 years later I still lead a normal life”

WITH 58 years old, Jose Antonio Garcia received “stick” the fattest in his life: he knew that his slight forgetfulness, his difficulty in finding certain words and his slight disorientation were due to the fact that he suffered from Alzheimer’s disease. At the time, he had three children in their thirties, a mortgage not yet paid off, and an 85-year-old mother suffering from dementia, for whom he was the legal guardian and trustee. But at night he was left without work and lost half of my income.

“I was fired after 30 years of service because I had Alzheimer’s they think you’re bad for nothing, and this is not so,” he condemns. In fact, now 10 years later still in full faculties, He sits on the board of directors of two associations, is involved in theater, runs a farmhouse, handles his family’s paperwork, drives a car and lives a “virtually normal“

José Antonio remains active, carrying out cognitive stimulation and participating in a study of Lecanemab, a drug that slows progression but is not approved in Europe.

In your case, the disease progresses very slowly, or you can even say that it has stopped. And he explains good evolution as the sum of three situations: object physically and mentally, stimulation educational and be a part rehearsal which has been testing Lecanemab in Spain since March 2021. It is a drug that slows the progression of the disease by 27%, but Europe has refused to approve it because it believes the benefits do not outweigh the possible side effects.

José Antonio has now become aware of his situation and, in fact, through the group of experts of the Spanish Confederation against Alzheimer’s Disease (CEAFA) and other groups, he is working intensively on break the stigma who is burdened by illness, but admits that at first it was “very hard” precisely because society believes that a person with this disease “has no ability.”

He did not become depressed, as many people do when diagnosed, especially if, like him, they had no pre-existing conditions; but he explains with pain that “society is expelling you”

“Stigma” of the word

He didn’t hit depressionas happens to many people who are diagnosed, especially if, like him, they have not been previously ill and are completely healthy. But he painfully explains that “society It drives you out.” “You lose friends and family, some talk to you, others don’t, the word carries a stigma that you’re no good for anything and that’s the hardest thing in the world.” you feel completely abandoned“

You lose friends and family, some talk to you, others don’t, the word carries the stigma of being worthless and that’s the hardest part, you feel abandoned.

To all this it should be added that, according to his experience, “ healthcare system leaves people with Alzheimer’s disease behind.” In his community, Andalusia, there is “no possibility of cognitive therapy in the public health system or supervision by a neurologist,” although in other autonomies they finance the therapy that José Antonio provides through the AFA Contigo association.

“The only answer I got from the doctor was to stay active and He prescribed me 14 tablets.Yes, for depression, yes for anxiety, to keep me calm, but I didn’t have any of these diseases, so now I only take four, and everything is fine,” he says.

He also received no help from social services. “When you get a diagnosis, you feel obligated to ask addictionbut they offered to help me get dressed 10 days a month, when I dress fine on my own, I need other things, like cognitive stimulation, which I have to pay for out of pocket, but fortunately they don’t help me get dressed,” he complains.

“This is a disease of forgetting, but at the same time forgotten: we have no treatment, no supervision, and if people are abandoned after diagnosis, they develop complexes, stop communicating and become even worse.”

Forgot

“It is a disease of oblivion, but also forgottenbecause we have no treatment, no follow-up, and if people are abandoned after diagnosis, they become complex and tend not to go out, not socialize, and they get worse,” he insists.

His daughter Sonya also admits it was difficult knowing her father had Alzheimer’s disease. “I didn’t believe it I didn’t accept it

“I felt really bad,” he says. But she is now proud that her father is a “life lesson” and that an active lifestyle has slowed the disease. “He doesn’t stop, he keeps his reports, he goes to the countryside, he goes to seminars, he goes to the theatre, he’s a ticking time bomb at all times,” he says.

The most important lesson that José Antonio wants to convey is that after being diagnosed with such a serious illness, “you can continue to live the same waybeing the same person, but the right to early and accurate diagnosis, pharmacological and non-pharmacological treatments such as cognitive stimulation, and care are guaranteed.” “I’m still me,” he concludes.

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