Between Hope and Acceptance: A Case Report of Als and Realities of Palliative Care in Indonesia

IntroductionAmyotrophic lateral sclerosis (ALS) is a rare, progressive neurodegenerative disease involving upper and lower motor neurons. However, the scarcity of However, the scarcity of pharmacotherapy choices pose significant challenges in managing ALS. This study aims to highlight the realities of ALS management in Indonesia.Case ReportA 39-year-old woman presented with dyspnoea and limb weakness in January 2024, which progressed to tetraparesis by July 2025. Her vital signs included a blood pressure of 102/74 mmHg, heart rate of 75 bpm, respiratory rate of 27x/min, temperature of 36°C, and oxygen saturation of 93% (room air). Neurological examination revealed tetraparesis (333/333; 111/111), with bilateral thenar-hypothenar atrophy. Physiological reflexes were diminished, and pathological reflexes were positive. The patient was admitted in early July with similar symptoms. Special examinations via lumbar puncture, magnetic resonance imaging (MRI), and spine CT scans revealed normal results. TTR-amyloidosis antibody, ANA, and anti-TPO test results were negative. Sural nerve biopsy indicated neuropathy. Electromyography revealed denervation from the cervical to lumbosacral regions, leading to a diagnosis of definite ALS (El Escorial criteria, King's grade 3). The ASLFRS-R score was 20. The patient received Riluzole 2x50 mg (from Germany) along with psychological support, physiotherapy, home care, and palliative treatment.Discussion and ConclusionThis case highlights the limited access to diagnostic tests and management for ALS in Indonesia. Edaravone and riluzole are the only available symptomatic treatments in Indonesia; unfortunately, their distribution are limited. Palliative and supportive care are currently the only options available for ALS patients in Indonesia. Uncertainty regarding the outcome affects the patient's quality of life.