Managing emergency preparation when special needs are involved

Hurricane Idalia reminds a Floridian to plan ahead for a range of possible crises

Lori Dunham avatar

by Lori Dunham |

Share this article:

Share article via email
banner image for the column

Last week, many of us here in Florida had to prepare for Hurricane Idalia. Emergency notifications warned of imminent inclement weather. By midweek, our grocery stores were bare and the line to fill our gas tanks wrapped around the station. Schools closed.

The hurricane threat moved me to action. How should I prepare for an emergency, weather-related or otherwise? What did I need to do in light of our daughter Grace’s diagnosis of Lambert-Eaton myasthenic syndrome (LEMS)? Were we ready for whatever might happen?

We all need to be able to handle a variety of emergencies. Be they bad weather, wildfires, or power failures, we can take concrete steps to prepare for them.

Recommended Reading
Clinicians in white coats hold up a giant magnifying glass to a patient as part of a case study into the disease.

Unusual symptoms of LEMS seen in rare case of woman, 62: Report

It’s imperative to have a plan in place long before an emergency occurs. Each time our family moved over the years, we discussed what we’d do in the event of a house fire. When our children were younger, for instance, we’d often make a diagram of our house and let them map out the path we’d take to escape a burning home.

Although our children are much older now, our emergency plans need to be more detailed in light of our daughter’s LEMS. If there’s a fire, for example, can Grace, 18, get out of the house on her own? Would she have enough strength to lift her storm window if the exits were blocked? Could she physically climb out the window when alone?

These were all new questions since her diagnosis. We needed to think through each of them, coming up with answers and the appropriate plans to match.

Some tips for emergencies

Many communities ask those with special needs to make themselves known to the emergency management services or first responders in the neighborhood. That way, they know someone’s in the home who needs extra help should anything threatening happen. Such notifications are a great way to assure appropriate help when the time comes.

Be sure to make a list of all medications, specialty pharmacies, doctors’ phone numbers, and insurance information. Have all of that readily available to take with you should you need to leave your home.

And when it comes to medications, be sure all of your prescriptions are filled. It’s a good idea to put a kit together ahead of time with essentials, including a supply of bottled water, batteries, and nonperishable food items. All of these can be purchased well in advance of trouble and tucked away for an emergency.

Share your emergency plan with a close friend or family member. Show them where to find documents listing doctors, medications, and pharmacies. Before last week’s hurricane, I shared our plan with close family members.

Equally important, I shared the information with Grace. As she moves into adulthood, I need to include her in this process. Does she know how to reach her contact at the specialty pharmacy should she lose her medication? Will she know how to get in touch with her neurologist, as well as how to make an appointment?

This past week provided a great opportunity to share details of Grace’s care with her. This information will empower her to take control of her own health needs.

None of us wants to think of a worst-case scenario. Hopefully, all our readiness for an emergency will never be needed. But these few steps can better prepare us in the unlikely event one happens.

Note: Lambert-Eaton News 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 other 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 Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.


Leave a comment

Fill in the required fields to post. Your email address will not be published.