How an emergency medical plan can benefit those of us with MD

“ICE” is a widely used acronym for “in case of emergency.” In today’s fast-paced world, many people have ICE contacts on their phones and folders on their computers that tell others who to call in the event of an emergency. Those of us living with chronic illness can and should have clear and concrete steps that loved ones can follow if a crisis occurs.

As my limb-girdle muscular dystrophy has progressed, I’ve learned that creating an emergency contact folder is helpful, but more can be done.

I’m now in my 50s and use a power wheelchair full time. I also live with heart and lung complications that come with advanced muscular dystrophy (MD), which, for me, has led to the use of noninvasive nighttime ventilation in the form of a BiPAP machine. I also have an internal pacemaker/defibrillator that was surgically implanted in January 2024.

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The pacemaker was placed during emergency surgery at a time when I was suffering a bout of pneumonia. In short, I became quite sick very quickly, and required a three-week stay in the intensive care unit at a Boston-area hospital.

Before I could get my paper ICE lists in order, I had been intubated and sedated. I couldn’t speak, and with weakened upper limbs, I couldn’t write. I had major difficulty communicating with family and hospital staff for over a week, even as several attempts were made to extubate me. I realized, even with sedation, that my ICE contact lists, though well thought out, had become quite useless. I couldn’t access them and hadn’t informed my loved ones how to do so.

If I could go back in time, I would share the following strategies with my past self. Hopefully these tips can help others, too.

What to include in your emergency medical plan

1. Label all of the durable medical equipment that you use at home with your name and, if applicable, the settings you use. Plan to have all of it brought to the hospital with you. It’s also helpful to include the prescribing physician’s name and phone number on the equipment.

2. You may be in a place where the doctors, while outstanding, have little to no experience with treating MD. Keep a written list of your “expert care team doctors” with you at all times in a wallet or a small bag. Be sure your loved ones know where you keep this information, and update it as needed. Do the same with a list of your current medications and their dosages.

Nonprofit organizations such as Parent Project Muscular Dystrophy and the Muscular Dystrophy Association offer resources and information about emergency protocols, which may be particularly helpful for patients receiving care at a clinic or hospital that’s not connected with their expert medical team. The emergency guidelines may not be specific to limb-girdle MD, but they can still provide helpful information.

3. Have a family member make a list of all of your possessions, including medical equipment, that are at the hospital with you. If you need to switch rooms, the staff will know what is yours and what is not.

4. Don’t wait to discuss how you might handle being unable to speak or write. Have this conversation with your loved ones before an emergency happens. When I was struggling to communicate, I used an alphabet board. Doctors and nurses would point to rows and letters with a pen, and I would nod my head to confirm a letter and spell out my needs. I suggest making a similar sheet ahead of time, and including phrases such as:

• “I am in pain.”
• “I need to be repositioned.”
• “I need to be cleaned.”
• “I have a question.” Include a list of common questions on the other side of the paper. For example:
  • “May I have an update on my care?”
  • “Am I able to increase/decrease my medication dosage?”
  • “Can someone help me adjust the TV volume?”

Of course, your situation will differ from mine, and this list isn’t exhaustive. But as I recovered, I thought about how this frightening situation could have been handled better. I learned these lessons the hard way, but hopefully you won’t have to.

I hope that those of you who live with advanced chronic conditions discuss your emergency plans with loved ones and update them regularly. Developing and following a predetermined strategy might help save your life.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.