ALS: live in spite of it, don’t just survive with it

On this awareness day, it is important to emphasize how patients with Amyotrophic Lateral Sclerosis (ALS) can achieve quality of life, even in the face of the challenges of the disease

The diagnosis of Amyotrophic Lateral Sclerosis (ALS) changes the lives of patients and their families. 140,000 new cases of the disease appear in the world each year (Ministry of Health), which affects the nervous system in a degenerative and progressive way. Patients experience gradual paralysis that can even result in early death due to loss of crucial abilities such as speaking, moving, swallowing and even breathing.

On World Amyotrophic Lateral Sclerosis (ALS) Awareness Day, 6/21, Dr. Renata Simm, neurologist at Imuno Brasil, brings a welcoming perspective to provide physical and mental quality of life for patients. Here are some valuable tips from the expert:

– Muscular Physiotherapy: the management of the musculature of a person with ALS must follow certain protocols. Resistance exercises should not be performed on muscles that the disease has already affected, that is, those series in which the focus is on increasing strength with the use of weights or elastic bands. Active and assisted active exercises are indicated, performed with the help of professionals or equipment.

 Speech therapy: in this type of therapy, exercises are performed that stimulate speech articulation and vocalization, to prevent as much as possible the paralysis of the area that encompasses speech and swallowing. And in the case of disease progression, the professional will institute the Augmentative and alternative communication (AAC), to maintain communication between team-patient-family.

– Respiratory physiotherapy exercises to improve the strength of the respiratory muscles, improving inspiratory and total lung capacity will provide the patient with a great quality of life and longevity, even postponing the need for mechanical ventilation.

– Mental health: to face everything that ALS brings, it is necessary that the mind is healthy, so that the desire to get up every day and delay the degenerative process as much as possible is constant. Going to a psychologist, not isolating yourself and taking good care of yourself are essential tips.

Psychological support is also very important for family members who live with patients.

– Medicines: as there is no cure, medicines are palliative and help to delay the evolution of the disease and must be taken regularly, always in agreement with the neurologist.

In view of all these tips, it is important that the patient, the family and the caregiver realize the need for a team and multidisciplinary treatment. Also, the doctor emphasizes the importance of having a specialist doctor to correctly guide the treatment and provide the best possible quality of life, since the disease can have a different evolution in each individual.

Renata Faria Simm: coordinator of the Neurology department at Imuno Brasil. Graduated in medicine with residency in neurology from the Faculty of Medicine of the University of São Paulo, Mini Fellowship and Observership in Multiple Sclerosis from Stony Brook University (NY, 2013), Colonia University (2016), Mont Sinai Hospital (NY, 2017), and Toronto University (2019). She is currently coordinator of the Department of Neurology at Hospital Santa Paula, and responsible for the Neuroimmunology/Immunobiological Therapies Outpatient Clinic at Hospital Santa Paula.