Patients with amyotrophic lateral sclerosis (ALS), a debilitating motor neuron disease, face unique challenges during natural disasters or power outages. ALS patients heavily rely on electrical equipment for maintaining their quality of life and often struggle with transportation to evacuation centers. However, a recent study conducted by Professor Osamu Kano and his team in Japan revealed that a significant portion of ALS patients and their caregivers are not adequately prepared for such emergencies.
The study involved a cross-sectional questionnaire survey, which found that over 70% of the respondents were unprepared for disasters. A concerning 86% of the participants had no backup plans for communication if phone lines were down. Additionally, only 30% had secured assistance for transportation needs, including ventilator users. Furthermore, 25% of the respondents did not have adequate stockpiles of food and beverages. Disturbingly, 12% of ventilator users did not possess essential equipment recommended by local governments, such as a bag-valve mask or external battery.
To make matters worse, even those who had the necessary equipment were lacking in knowledge about its usage. Specifically, 75% of respondents with bag-valve masks did not know how to use them, and approximately 40% of those with external batteries had not adequately charged them.
The findings of this study highlight the urgent need to improve disaster preparedness among ALS patients and their families. While academic societies and local governments have made some efforts in this regard, there is still much work to be done. The researchers believe that their study will ignite more meaningful discussions and actions concerning disaster preparedness for ALS patients.
In conclusion, ALS patients require special attention and support during times of crisis. Enhancing disaster preparedness measures, providing education on equipment usage, and ensuring access to essential resources are crucial steps in safeguarding the well-being of ALS patients and enabling their resilience in the face of emergencies.
Source:
– Takehisa Hirayama et al, The necessity to improve disaster preparedness among patients with amyotrophic lateral sclerosis and their families, Journal of Clinical Neuroscience (2023). DOI: 10.1016/j.jocn.2023.08.002
