“I think I lost my wife due to changes in character caused by illness.”

Forgetting medical prescriptions, names, or being unable to find the exact words to express your thoughts. These were the first signs that alerted people. Javier Saenz. At that time he was 57 years old (now 62). “Everyone told me not to worry, that it was an age issue and that the same thing happened to everyone,” he recalls. He tried to let it go, but the “mistakes” kept getting worse. He worked for the same company for 43 years as a welder. “It was a job that I obviously knew very well. I went from production to service and stayed there for ten years. The management changed, and I was returned to production. And there in one year I made three mistakes. That’s when I thought, “After all this time, it’s not normal that this happened to me.”

Javier asked for a consultation with his family doctor. “I told him that he had been forgetful for two years and that these mistakes at work were not normal. “I knew something was happening to me.” She gave him a test “and told him there was something but she couldn’t name it.” A few months later he was given a final diagnosis: frontotemporal dementia.

As explained by the Spanish Society of Neurology, this type of dementia, also known as FTD, is a group of diseases that involve degeneration of the frontal or temporal lobes of the brain, including brain tissue associated with speech and language. It differs from others in that it is accompanied by a progressive deterioration of behavior and language, and approximately 60% of cases occur in people aged 45 to 64 years.

Confirmation was a bucket of cold water. “Although I didn’t know what was happening to me, it never occurred to me that it might be dementia. And it completely confuses you because It’s hard to imagine that you are suffering from this. You don’t know what awaits you in the medium term, much less in the long term,” he admits. “What do you do with your life after you are diagnosed with dementia? Now you are being deprived of the opportunity to work… What should I do with my life if there are 24 hours in a day,” he reflects. This first blow forced him “to lie on the couch for several months,” but he soon decided that this was not what he wanted. what he wants for his future.

Changes in character

He was aware of some of the symptoms associated with dementia, such as forgetfulness: “These are situations where you become aware of it because you’re about to call someone in front of you and you realize you don’t remember. “what is it called. But in my case, I think what I suffered most was from the changes in my character.

Possible symptoms that this disease can cause include difficulty performing activities that were previously performed normally, disinhibition, aggressiveness, apathy or self-neglect, and language problems (some patients cannot understand words, while others have difficulty). their pronunciation or composing sentences). They don’t have to appear for everyone, it always depends on each case.

Javier explains that changes in character are difficult to identify: “In my case, I have to become aware of more problems because I don’t know to what extent I get upset, I get upset. Depending on which people you shoot more or less. There is something like a sound trigger that you even think is normal because it happens to you often. You live this normally, but the person next to you is not. My partner told me: “It’s just that curves lose you.”

So the diagnosis helped him look back and realize “that a lot of the problems I had with some people, including my partner, were because of this: because the character completely changed me” In fact, he adds: “I think I lost my wife due to changes in character caused by illness. There are things you can do well, but your partner will suffer the most because he lives with you 24 hours a day.

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Working on yourself: the evolution of the disease

“We all think of dementia as finding a person in a wheelchair who doesn’t even recognize the family. And that’s a possible reality, but it was clear to me that I wanted to fight in a way that would take a long time. Honestly, the first thing I thought in life was that I came first,” he explains.

When he left counseling with his diagnosis, one of the first things he did was register with the Alzheimer’s Families Association. “From there I was placed in a therapy group with an occupational therapist. “I spend Monday and Wednesday working on my mind.” Five years later, “I can’t say that I’ve improved at anything, but in my memory I know that I’m even better than before because I’m practicing it now.”

Javier remains active throughout the day. He gets up very early; he was already awake at six or seven in the morning. He has breakfast, cleans up, takes his grandson to school. “And I’m going to walk for an hour and a half because the doctor told me I need to lose weight. In fact, I have lost fifteen kilograms and feel very good. After that, I do exercises for two hours, and the rest of the day is as it goes: I’m with friends, I talk a lot. Doctors always tell you that the less time you spend alone, the better.

During all this time, he noticed that the disease was developing, but very slowly. First of all, when it comes to memory problems. “I had a slight loss of concentration. I go depending on whether I’m talking to someone, whether this topic is interesting to me. I noticed it there. But otherwise, I must say, there haven’t been any big changes compared to what I said before, because I work a lot.

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In addition, for three years Javier was also part of the Expert Group of People with Alzheimer’s Disease (PEPA) of Seafa (Spanish Confederation of Alzheimer’s Disease). An organization that brings together more than 300 family associations and represents the interests and needs of more than 4.8 million people living in Spain with Alzheimer’s disease and other dementias. “I, who never thought about talking with politicians, was with them at the Congress of Deputies. Because in addition to working on myself, I also want to help other people,” he says. He is usually present in various conversations aimed at other patients, in which he talks about his illness. In fact, a few days ago he took part in several awareness days on the occasion of World Alzheimer’s Day in Afako (A Coruña).

One of his goals is to ensure that all people diagnosed like him can access rehabilitation. “I have it because I’m in the association. But not everyone has a fence or can afford one. Imagine a fee of 200 euros and, if you live in a small town, you need to find transport to go. I understand people who can’t. “Social security must provide a solution to this problem,” he argues. There is currently no treatment for frontotemporal dementia. The best way to slow down the progression of the disease is, in addition to early diagnosis, cognitive stimulation and maintaining a healthy lifestyle.

To access this rehabilitation, “I think the main thing is to accept the disease. This is one of my biggest frustrations with my colleagues. There are people who enter into associations with such a minimal problem as mine, and go into denial: what am I doing here with these? But this vision is useless, the stigmatization of the disease is very bad. “Because they take your mind off work, we will be positive and contribute to society.” “I’ve been fighting for five years now and I’m fine. I sign up to stay like this,” concludes Javier.

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