Congress passes ALS Law: a crucial step for patients and their families

The Congress of Deputies has taken a historic step with the approval of the new Law on Amyotrophic Lateral Sclerosis (ALS) , a neurodegenerative disease that affects thousands of people in Spain. The approval of this law represents a long-awaited victory for patients and their families, who fight daily against a disease that has no cure and progresses rapidly. This legislation represents a key milestone in the treatment and care of those who suffer from this disease and other similar ones.

What does this law mean for ALS patients?

With the approval of this law, ALS patients will see a considerable improvement in several aspects of their quality of life. One of the most relevant points is the acceleration of diagnoses . ALS is a disease that progresses quickly and devastatingly, so obtaining an early and accurate diagnosis is crucial for those affected. Thanks to this law, health services will be obliged to reduce waiting times for diagnoses and guarantee specialized and adequate care from the outset.

In addition, comprehensive and multidisciplinary care for patients is reinforced . The law establishes a framework for ALS patients to receive treatment and support from various specialists, including neurologists, physiotherapists, occupational therapists and speech therapists, which will allow for more coordinated and complete care.

Main advantages for patients and their families

One of the most eagerly awaited improvements under the ELA Act is greater support for carers and families . The burden on family members of patients is enormous, as most sufferers quickly lose their ability to move and communicate, requiring constant care. The Act introduces measures to alleviate the economic and emotional impact this has on family members, providing financial aid, counselling and psychological support.

On the other hand, this law also represents a significant boost in scientific research . Funding to investigate possible treatments and cures for ALS will be a priority, allocating public resources to the search for new therapies. This is especially relevant, given that there is currently no treatment that effectively stops the progression of the disease.

Key aspects of the new ELA Law

1. Reduction in diagnosis times : The disease progresses rapidly, so it is essential to identify it as soon as possible to improve the patient’s quality of life from the early stages.
2. Comprehensive and coordinated care : A specialized care system will be created, where patients will receive care from different medical professionals jointly, to cover all their physical, psychological and emotional needs.
3. Support for families and caregivers : Financial aid, counseling and psychological support will be provided to families caring for ALS patients, who often have to assume this responsibility exclusively.
4. Boosting research : The law encourages funding for studies and research to find treatments that can improve the quality of life of patients and, ultimately, find a cure for the disease.
5. Access to innovative therapies and treatments : All ALS patients will be guaranteed access to the most advanced treatments available, eliminating the economic or geographical barriers that often limit this access.

Impact of the law on the future of ALS

The approval of this law marks a turning point in the fight against ALS in Spain. Not only will it significantly improve the quality of life of those suffering from the disease, but it also provides a legal framework for the development of better public health policies and social support around neurodegenerative diseases. Patients and their families thus see how their demands are finally heard, achieving concrete progress in such fundamental aspects as access to treatments and support for caregivers.

In a country where approximately 4,000 people suffer from this disease, this law means hope, dignity and rights for those who face a battle as complex and devastating as ALS every day.

The importance of rehabilitation in patients with ALS

A fundamental aspect in the care of patients with Amyotrophic Lateral Sclerosis (ALS) is rehabilitation , which, although it cannot stop the progression of the disease, plays a crucial role in improving the quality of life of those affected and alleviating the impact of the symptoms.

Rehabilitation includes a set of physical/physiotherapy, occupational and speech therapies that are tailored to the needs of each patient based on the stage of the disease. These interventions can help in several ways:

1. Maintain mobility and prevent contractures : As ALS progresses, muscles weaken and atrophy. Physiotherapy can target muscles that have not yet been severely affected, helping to maintain mobility, prevent contractures and delay loss of function. Specific exercises can improve coordination , muscle strength and flexibility , which is crucial to maintaining independence for longer.
2. Improving breathing capacity : As ALS affects the respiratory muscles, patients may develop difficulty breathing. Respiratory physiotherapy techniques are essential to strengthen these muscles and help expel secretions, thus reducing the risk of respiratory infections and complications.
3. Occupational Therapy : Occupational therapists work to improve patients’ functional abilities, enabling them to perform daily activities more easily. This includes the use of assistive technology and adaptations that make tasks such as dressing, eating, and moving around the house easier. The goal is to enable the patient to maintain their autonomy for as long as possible.
4. Speech and swallowing therapy : ALS also affects the ability to speak and swallow. Speech therapists work with patients to improve speech articulation and enhance their communication skills, as well as teach safer swallowing techniques, reducing the risk of choking and malnutrition.
5. Emotional and psychological support : The emotional aspect is vital in the rehabilitation process. Through physiotherapy and other therapies, patients can experience a greater sense of control over their body, which helps them reduce the psychological impact of the disease. Rehabilitation can also contribute to improving self-esteem and general well-being, allowing patients to maintain greater independence.

Benefits of rehabilitation in ALS

• Greater independence : Rehabilitation helps patients perform everyday tasks on their own for longer, promoting a more autonomous life.
• Improved well-being : Maintaining mobility and breathing can reduce pain and discomfort, improving quality of life.
• Slowing the progression of symptoms : Although rehabilitation cannot stop ALS, it helps maintain muscle and respiratory function for longer.
• Reduction of complications : By preventing contractures, respiratory infections and swallowing problems, rehabilitation can reduce hospitalizations and complications associated with the disease.

Rehabilitation for ALS patients is a key tool that not only improves their quality of life, but also helps them cope with symptoms with more control and dignity. At Rehabot Clinic, we firmly believe that a movement-related degenerative disease is combated through movement, activity and maximizing independence. We also work on function through occupation, recognizing that each person and family are unique. Our interventions are tailored to each individual, covering the widest possible scope of care and intervention.