At the 2026 MGFA National Patient Conference, caregiver Myron Truex shares why having a bug-out bag and being prepared can support care for myasthenia gravis. He highlights the importance of advocacy and having key information ready in emergencies.
Transcript
BOB is an acronym for bug-out bag. Everybody should have a bug-out bag for basically any emergency, but specifically for myasthenia gravis patients, because you need to have access to information that you can hand to doctors and any emergency medical technicians because they don’t have a clue about what myasthenia gravis is.
They don’t know what they can and can’t give you. Simple thing like you don’t necessarily give a myasthenia gravis patient oxygen. You can cause the breathing to literally stop.
So it’s really important that you be the advocate. You have the information, and I guarantee you, you go to an emergency room, you’re going to know more about it than the doctor does. Even neurologists are not all specialists in this disease. It’s that rare.
So you need to be prepared. You need to know your stuff.When you’re dealing with a medical professional, you say, “no, we’re going to do this.” “We’re going to do that.” “No, you’re not going to do that.” “You’re going to read this.”
Even dentists need to have this because patients can’t take certain medicines. So it’s very important that you know as much about this as possible.
You got to protect your loved one. So you might get well despite the doctor, not due to them. And they don’t intend to do that, obviously. But every opportunity that we have when we go to a doctor’s appointment, there’s generally some new intern or something.
I get them in the corner and I start giving them my five-minute spiel and bring their awareness of it, and they usually go away saying, “We spent 12 minutes on that med school.” Well, now you just spent five more minutes, so you almost doubled your knowledge. So that’s my take on be prepared.
Have a bug out-bag. Highly recommend you have one of those LifeVacs inside. Because choking is a real issue for myasthenia patients. They can’t chew well, they can’t swallow well, so they can choke very easily.
So you need to be prepared with that. Every person that is a caregiver should be well versed in first aid of all kinds, CPR and whatnot. So that’s my short take on it, if that’s helped you.
