Maradona37
Well-known member
Thanks for raising awareness of this disease on here. I started to know more about it (had heard of it before) when Fernando Ricksen (who you mention earlier in the thread) was diagnosed with it.There was an ALS Day on Saturday but sadly not nearly enough awareness for this disease and most patients/their families are often still on their own.
Each year on June 21, the International Alliance of ALS/MND Associations recognizes Global Day – a day to raise awareness of ALS/MND, a disease that affects people in every country around the world. ALS/MND does not discriminate by race, ethnicity, income, or geography.
That interview is a life lesson for everyone. We complain about "little things" in our lifes and often make them bigger issues than they really are. But as he said as long as you are healthy and have the right mentality you can do almost everything. It's sad most of us don't realize that until it's too late.
He said at start of the video that next week (July 1) there will be 6 years since he was diagnosed. Doctors initially gave him four more years to live and yet he's still here. And I think that positive attitude is a big reason why. He accepted his fate as he said he's not stupid to believe he can win against a disease that nobody has beaten. But he "enjoys" the new life the best he can and try not to make life of those the closest to him even harder than it is. Couldn't blame him if he would be grumpy and berating everyone like many people in his positon would do when they feel useless and just wait for their moment to come. His wife is a big hero as well. Can't imagine how hard must be to take care of him with disease progressing. And ofc looking at a person she loves slowly dying in front of her eyes knowing she can't do anything is just terrible.
He's using last years (and now probably months) of his life to travel around Spain (which in his condition must be very demanding) to raise awareness and help other ALS patients. He's financially capable to cover costs of the disease but most people can't afford that. People's lifes should not depend on their social status but as we know that's not the case.
Unzué denounced that since the law was passed, 600 ALS patients have died without receiving this aid, which he emphasized is necessary to address these individuals' needs and entails high costs. "A few people, wanting to live, have been forced to die, in some cases to avoid ruining their families," he stated.
His speech in the congress last year was powerful too.
The new ALS law passed in October last year but not much has really changed in reality over last 8-9 months as patients are still waiting for the financial aid. And some won't need that anymore. Probably those corrupted politicians let people die and keep money in their pockets.
In Spain, it is estimated that between 4,000 and 4,500 people live with ALS. Every day, three people are diagnosed and another three die from it. The average age at diagnosis is between 55 and 65 years, and life expectancy is between three and five years.
The direct and indirect costs of the disease can easily exceed €35,000 per year, and can rise to €100,000 in advanced stages. This is an unaffordable figure for most families, who must cope with home care, technical equipment, home adaptations, therapies, speech therapy, and communication devices.
In May 2025, the Ministry of Health announced a "shock plan" with a €10 million allocation for patients in advanced stages of the disease, as a temporary solution while structural funding is negotiated. For the associations, this is an "insufficient and belated" measure.
Since the law was passed, more than 600 people have died without receiving any help, Jiménez Aroca complains. "We were promised dignity, but we continue to depend on the invisible efforts of families."
Una ley sin presupuesto y más de 600 muertos: la urgencia de vivir con ELA en España
La atención integral prometida por la Ley ELA aún no se ha puesto en marcha. Los cuidadores familiares lo afrontan todo, desde la renuncia al trabajo hasta la bancarrota, sin que la Administración reaccionewww.abc.es
It's a terrifying disease which robs patients of all their physical vitality. Like the article says the financial costs are very difficult for most people, and that is before getting into the emotional costs.
Just a horrible, horrible disease. As bad as cancer really, but less frequent so less well known about.
