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EMT/Emergency Room Information for Patients with Amyotrophic Lateral Sclerosis (ALS)

15 June 2019
EMT/Emergency Room Information for Patients with Amyotrophic Lateral Sclerosis (ALS)

All of you undoubtedly remember the "Ice Bucket Challenge" a few years back where people used social media to challenge each other to raise money for and awareness of Amyotrophic Lateral Sclerosis (ALS). People would dream up all sorts of ways to make their ice bucket challenge more extreme than the last one, not only challenging each other but one-upping each other. According to the ALS Association's Sacramento Chapter, the ice bucket challenge raised $115,000,000. That effort spurred a massive increase in The ALS Association’s capacity to invest in promising research, the development of assistive technologies, and increased access to care and services for people with ALS.

Well, the patients with ALS have some very specific symptoms and the care for these patients, when encountered may not be routine. The following information is from the Sacramento Chapter of the ALS Association and is some good information. Thank you ALSA.

EMT/Emergency Room Information:

SHORTNESS OF BREATH: If I display shortness of breath or low SpO2, do not give me oxygen unless I have another respiratory condition that requires it. I may need noninvasive positive pressure ventilation to expel CO2.

OXYGEN MAY NOT HELP AND MAY MASK RESPIRATORY FAILURE: My lungs are healthy, but my muscles including diaphragm are weak. IF I am using a BPAP at home, the settings should be the same as those. IF NOT, a BPAP with a pressure of 12/6, backup rate of 10 with titration as needed may help.

LAYING ME ON MY BACK: May be difficult for me because of the possibility of CO2 retention due to diaphragmatic weakness and aspiration due to poor ability to protect my airway. I may be able if using a BPAP or non-invasive mechanical ventilation.

AVOID: Paralytic or general anesthetics, narcotics or muscle relaxants unless absolutely necessary. If used, the ability to rapidly assist ventilation non-invasively or invasively should be available.

If I have a gastrostomy tube, please use that for administration of “oral” medications.

I may slur my words or not be able to speak at all, but I UNDERSTAND what you are saying. Speak to me in a normal voice and ALLOW ME TIME to communicate.

My caregiver(s) and I are extremely knowledgeable about my condition, treatment needs and equipment. Please work with us.

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