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ALS EMT/Emergency Room Information

  • If I have a gastrostomy tube, please use that for the 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.

SHORTNESS OF BREATH: 

If I display shortness of breath, 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. 

AVOID 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.

Downloadable PDF Here

ADDITIONAL RESOURCES: 

Download the ALS Association Key Medical Information app, which provides medical personnel with critical information to care for a person with ALS (amyotrophic lateral sclerosis) during an emergency. In addition to medical dos and don’ts, the app provides a communication board and emergency contact fields for users to reference.

The ALS Association developed a series of communication and educational tools to help inform medical providers as well as provide pertinent insurance and family information. Check out the tools here

 This information was adapted from the ALS Association of Greater Sacramento.

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