Living with ALS and not losing your smile

He always has a smile on his face and something good to say.

Oliver Thansan
Oliver Thansan
15 March 2023 Wednesday 00:55
9 Reads
Living with ALS and not losing your smile

He always has a smile on his face and something good to say. In the meantime, ideas to help people suffering from his illness are running through his head. Juan Carlos Unzué, Barça's exporter, has amyotrophic lateral sclerosis (ALS), but the disease has not slowed him down. Despite the disadvantages of covid, he managed to arrange a charity match between Barcelona and Manchester City in August, which raised 4.3 million euros for research into this disease that affects around 4,000 people in Spain

Now, Unzué has stood in front of journalist Xavi Torres' camera 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 ALS, with whom the footballer has been making friends after learning of his diagnosis. The result is Unzué. Juancar's last team, a documentary that premiered on Monday at the Malaga Festival.

Unzué acknowledges in an interview with La Vanguardia that she is a "positive" person and that this has helped her endure ALS: "I do everything with passion, and that brings smiles, but it is clear that I have had moments of frustration and discomfort, because life is not perfect. However, I try to create situations that help me keep smiling".

Torres, the director of the film, explains how he met Unzué: “He was a Barça player and I do information about the club for TV3. Now I run an area of ​​documentaries with a sports theme. When Juan Carlos announced in June 2020 that he had ALS and asked for help, I saw that I had the tool to support him. It's been two and a half years of filming, complicated with the pandemic in the middle, but they will serve to fulfill the objective of giving visibility to ALS and raising funds to research it."

Very little is known about ALS, and "this was the first reason I made my diagnosis public". "ALS was unknown to me, and that is not a positive thing when the neurologist tells you that there is no cure and that you have between three and five years left to live. The same thing happens to many others affected, and that is why it is so important to give visibility to this disease".

Unzué recalls: "In 2018 I started to notice an exaggerated tiredness, above what is usual. Then he was coach of Celta de Vigo. I decided to rest, but when I realized that cycling, which is my hobby, was exhausting me, I was really upset. Then a finger on my left hand started to work uncoordinated and I thought something serious was happening to my body. The doctor did not give me a diagnosis. The following summer it also happened to my foot and the doctor was then sure of what was ailing me. 18 months passed between the first symptoms and the diagnosis, because you have to rule out other possibilities, and this involves time and causes uncertainty and anxiety."

Despite the serious situation, the footballer stays with the good part: with the care and support of his family: "Feeling accompanied is priceless. Faced with this diagnosis, my family is even more dependent on it and is closer, and this makes me feel that I am privileged, because not everyone is this lucky. We live in a country where the family is strong, and I'm taking advantage of that."

Maria, his wife, is the pillar of the family. "He came to my village when he was ten years old. I asked her out at 13 and she gave me pumpkin. But at 14 we were dating, and we've been together ever since. In normal life I already loved him very much, but now I love him more. It's a love that I could never have imagined", concludes the player, who hopes that this documentary will serve to give visibility to ALS and those who suffer from it.