ALS refers to Amyotrophic Lateral Sclerosis and is often called Lou Gehrig's disease, after the baseball player who was diagnosed with it in 1939. ALS is a neurodegenerative disease that causes the brain to stop talking to the muscles, causing increased paralysis over time.
Ultimately, ALS patients become prisoners within their own bodies: unable to eat, talk, breathe or move on their own. Their mind, however, often remains sharp so they are aware of what’s happening to them. ALS will affect 1 in 300 people in our lifetimes, and patients usually have no more than 2-5 years to live following diagnosis.
I AM ALS encourages people with ALS to wear a medical identification bracelet or necklace. Many emergency personnel may not be familiar with the unique needs of caring for someone with ALS so a medical ID can be helpful in telling them the highest-level do's and don'ts.
The following complications are associated with Amyotrophic Lateral Sclerosis (ALS) as the disease progresses:
Source: Mayo Clinic
Get prepared for emergency medical situations. A medical ID bracelet or necklace for ALS can help alert medical professionals like responders, doctors, and nurses about the presence of ALS. Wearing a medical ID can help ensure that a patient will receive the safe and appropriate care that they need.
SHORTNESS OF BREATH: If shortness of breath is displayed, do not give oxygen unless there is another respiratory condition that requires it. There may be a need for noninvasive positive pressure ventilation to expel CO2.
OXYGEN MAY NOT HELP AND MAY MASK RESPIRATORY FAILURE: An ALS patient’s lungs are healthy, but muscles including the diaphragm are weak. If the patient is 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 ALS PATIENT ON THEIR BACK: This may present a difficulty because of the possibility of CO2 retention due to diaphragmatic weakness and aspiration due to poor ability to protect their airway. It may be possible 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.
Disclaimer: The given examples may not be applicable to all ALS patients based on their individual diagnosis. Ask for your doctor's advice on critical information to communicate during an emergency.
Engraved information on an ALS medical ID can make it easier for first responders to assess a patient's health situation. Without a medical ID, signs and symptoms of ALS can be misconstrued and lead to misdiagnosis.
Engraving Information Should Include:
ALS is a complicated disease and as such, all health information may not always fit on a medical ID tag or plate. An expandable emergency wallet card can be utilized to hold additional details such as prescribed medications or special care instructions.
"Some health professionals and emergency personnel may not be familiar with the unique needs of a person with ALS. As such, it is important to know what information is essential to share to ensure you or your loved one receives appropriate care in an emergency medical situation." - I AM ALS
I AM ALS is a patient-led, patient-centric movement revolutionizing how to find cures for terminal, rare diseases. The non-profit brings together ALS patients, advocates, organizations and scientists to deliver critical and innovative resources for patients, empower and mobilize patients and their networks to lead the fight for a cure and transform the public understanding of ALS with a goal of flooding the research pipeline with new, lifesaving drugs. Founded in 2019 by husband and wife team Brian Wallach and Sandra Abrevaya, I AM ALS was born out of their desire to change the future for Brian and the thousands of other ALS patients throughout the world. A cure is possible if we work together to re-imagine the fight against ALS.