
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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