He always has a smile on his face and something nice to say. Meanwhile, ideas are going through her head to help people who suffer from her disease. Juan Carlos Unzué, former Barça goalkeeper, has amyotrophic lateral sclerosis (ALS), but his ailment has not stopped him. Despite the inconveniences of the covid, he managed to hold a charity match between Barcelona and Manchester City in August last year, raising 4.3 million euros to investigate this disease that affects some 4,000 people in Spain.
Now, Unzué has stood before the camera of journalist Xavi Torres to explain how to live with ALS. It has been more than two years of filming in which Torres has approached Unzué’s family and others affected by the disease with whom the footballer has become friends after learning of his diagnosis. The result is Unzué. Juancar’s last team, a documentary that premiered yesterday at the Malaga Festival. Taking advantage of his time at the Malaga event, the protagonist and director have given an interview to La Vanguardia.
You are always smiling. Despite his illness, he has not lost his joy…
Unzué.- It is not necessary to exaggerate, but it is true that I have always been a positive and very active person. I have the feeling of doing what I want. I do it with passion and that generates smiles, but of course I have had moments of frustration and anger because life is not perfect. However, I try to create situations that help me keep smiling.
How did the idea of ??shooting this documentary come about?
Torres.- Unzué and I knew each other because he was a Barça player and I do information about the club for TV3. Now, he runs a sports-themed documentary area. When Juan Carlos announced in June 2020 that he had ALS and asked for help, I saw that I had a tool to give him that support. It has been two and a half years of filming, complicated by the pandemic, but they will serve to fulfill the objective of giving visibility to the disease and raising funds to investigate it.
Had you heard of this disease before it was diagnosed?
Unzué.- Very little and that was the first reason why I made my diagnosis public. ALS was unknown to me and that is not positive when the neurologist tells you that there is no cure and that you have between three and five years to live. The same thing happens to many other affected people and that is why it is so important to give visibility to this disease.
What were the first symptoms?
Unzué.- ALS is very variable in its symptoms. In 2018, I began to notice an exaggerated tiredness, above normal. Then he was the coach of Celta de Vigo. I decided to rest, but when I realized that riding a bike, which is my hobby, exhausted me, I got really worried. Then a finger on my left hand began to work in an uncoordinated way and I thought that something serious was wrong with my body. The doctor did not give me a diagnosis. The following summer, it also happened to me with my foot and the doctor was then certain of what ails me. 18 months passed between the first symptoms and the diagnosis because other possibilities have to be ruled out and that implies time and generates uncertainty and anxiety.
The spectators of Unzué. Juancar’s last team will fall in love with his wife, María, because she is an example. Her three children are also fantastic. Is the family the great support in such a hard time?
Unzué.- Feeling covered is priceless. Faced with this diagnosis, my family is even more aware and close and that makes me feel that I am privileged because not everyone has that luck. We live in a country where the family is strong and I am taking advantage of that.
How did you and Maria meet?
Unzué.- María came to my town when she was ten years old. I asked her to be boyfriends at 13 and she gave me pumpkins. But at 14 we were already dating and since then we have been together. In normal life I already loved her a lot, but now I love her more. It is a level of love that I could never have imagined.
As a result of the disease you have made new friends with other ALS patients…
Unzué.- Some have been interested in getting to know me and I have approached others to find out about their reality, their problems, their claims. I am aware that I had a loudspeaker and I have used it to transmit ALS from a collective perspective and not in a personal way. It has been the best decision I have made in my life. I tell you this with all sincerity, because I have given, but I have received in a multiplied way. I feel useful and that is necessary for everyone.
Torres.- Juan Carlos is very generous, because he can pay for his ALS, but he has chosen to worry about the entire universe of the disease.
Thanks to that charity match that you promoted, 4.3 million were raised to investigate ALS. Do you hope there will be advances in the study of the disease?
Unzué.- I have no hope that those currently affected will benefit, but thanks to these resources we will be closer to a cure and a solution. We are all selfish and I will do my best until the last day. We have managed to move people and be more supportive, although I am aware that the world cannot be perpetually aware of us.