ALS Ice Bucket Challenge Progress

 

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


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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