Upon receiving a diagnosis like ALS, one might expect the first request for help to be psychological. However, the reality for many patients is different. Obdulia Falcón, head of the Association of Neuromuscular Diseases of the Canary Islands (ASENECAN), explains that while they convey a message of calm, the most pressing demand from those affected centers on assistance to navigate the tedious administrative process.
Falcón describes how, surprisingly, patients' primary concern is not always psychological care but the administrative "mare magnum." The association, which assists individuals with ALS and 152 other neuromuscular pathologies, finds that the real urgency for those affected is to "enter the system" to process dependency and disability benefits. This need for speed contrasts with the progressive nature of diseases like ALS, which has an average life expectancy of 5 to 6 years post-diagnosis, making every day crucial for obtaining necessary support.
Regarding the recent ALS Law, the president of ASENECAN expresses disappointment, stating that "nothing has changed" tangibly for patients. Despite discussions about the regulation, its practical effects are not yet reflected in patients' lives. The law includes the figure of the personal assistant, but Falcón warns of the scarcity of these qualified professionals, making the law, for now, a "promise" awaiting effective fulfillment.
The illness radically impacts not only the patient but also their family environment. Obdulia Falcón, who is also a caregiver and lost her eldest son to Duchenne muscular dystrophy, shares her personal experience: "Life changes radically, 360 degrees." The family member becomes a full-time caregiver overnight, where the main focus shifts to quality of life and basic needs. Therefore, Falcón emphasizes the vital importance of caregivers and family support, which led to the creation of ACNICAM in 2007 to offer services such as physiotherapy, speech therapy, and nutrition.
Despite the hardships, patients with neuromuscular diseases are described by Falcón as "examples of life" demonstrating "courage" and "valor." "They are people who, despite adversity, do not give up," she concludes, teaching that "every day you wake up is a maximum gift."
