And Alicante that suffers amyotrophic lateral sclerosis (ALS) is the first Spaniard to finish a marathon thanks to an adapted vehicle that allows him to participate in this type of sports race. José María Caruana, 64 years old, and diagnosed more than three decades agostarted last month October to participate in Half marathons through the province of Alicante and its borders with a recumbent tricycle with which he ran the 21 kilometers of these tests but he noticed that he could resist more and chose to run his first marathon last Sunday, a 42-kilometre test, which he also completed in Murcia.
Caruana wants give visibility to the disease and convey the message that sport helps ALS patients. The expectation of a patient with this disease is approximately five years from the time of diagnosis, but there are people who lead a quality life for five years or more. More than half of all patients live more than three years after diagnosis. In the case of this man from Alicante, it goes much further, since He received the diagnosis in December 1992, at that time a young man in his early 30s, a lawyer by profession who also practiced.
“70% of ALS patients do not exceed a life expectancy of between 3 and 5 years. I have been 30 years old and I try to play sports, which in my case helps me to stay alive,” he explains.
“70% of ALS patients do not exceed a life expectancy of between 3 and 5 years. I have been 30 years old and I try to play sports, which in my case helps me to stay alive”
ALS is a progressive disease of the nervous system that affects neurons in the brain and spinal cord. Motor nerve cells wear out or die and can no longer send messages to the muscles. Over time, this leads to weakness, spasms, and the inability to move the arms, legs, and body. The condition worsens slowly and when the muscles in the chest area stop working, it becomes difficult or impossible to breathe, that is, it is a degenerative disease that immobilizes the person. ALS it affects approximately 5 in 100,000 people worldwide.
In the Murcia marathon he invested an actual time of 3 hours and 7 minutes because his recumbent trike ran out of battery and he had to order another one. “I have been more than half an hour waiting until the help team could bring me the second since all the streets were cut off by the marathon. The time that I could surely have done is two hours and 25 minutes since I only had about 4 kilometers left to reach the finish line and on top of that downhill”, he explains.
The adapted vehicle has a pedal assist motor. “If you don’t pedal or move pedals it doesn’t work or it doesn’t help you. The trike weighs about 30 kilos plus my weight, about 85, plus the batteries, we are talking about 120 kilos of weight for two and a half hours of exercise. It is a great effort for anyone and even more so for someone affected by ALS,” says Caruana.
“The adapted vehicle has a motor to help pedaling. If you don’t pedal or move the pedals, it doesn’t work or it doesn’t help you. It’s a great effort for anyone and even more so for someone affected by ALS”
The trike he uses had two batteries from the former owner, Jorge Abarca, also affected by ALS, who died in September 2020. Caruana bought the vehicle from the family of the deceased about two years ago and “the batteries are no longer in their best condition,” he explains.
On your horizon is the Paris marathon, the first international that he will run, on April 4. He already has everything prepared and the tickets purchased.
His relationship with this sport began with his first half marathon, 21 kilometers and 97 meters, which he ran in El Campello on October 2 together with Andrés Micó, “one out of the ordinary”. He has also played the one in Santa Pola, with a time of 1 hour, 4 minutes and 58 seconds, his best mark so far; that of Totana (Murcia) and that of Aspe, among others.
“Each race I try to finish from start to finish, I take cameras and I record videos” about his participation in the tests to encourage others affected by ALS. “I encourage people to play sports because it is healthy and in my case I think it has kept me more stable.”
His only setback so far is that he was not allowed to participate in the Seville half marathon. The judges did not allow him to start from the front line with his adapted vehicle.
