Hurricane Beryl made landfall earlier this month in Texas, proof positive that the 2024 hurricane season is well underway for millions of Americans. But even if you don’t live in part of the country where having a hurricane plan is encouraged, the reality is weather and other natural emergencies can, and do, occur everywhere, at any time of year. For people living with ALS, their families and caregivers, having a plan for how to deal with emergency situations is vital because of the challenges the disease presents.
How to put together just such a plan was the subject of our recent webinar “Emergency Preparedness: Expect the Unexpected, When Living with ALS” presented by ALS Association Equipment and Assistive Technology Manager Michelle Fredrick (PT, ATP).
Here are some tips that were shared to help you craft an emergency plan for you and your loved ones:
Be Aware. The first step in being prepared is to understand your surroundings and what type of emergencies are most common in your area. Be sure you and your caregivers are signed up to receive emergency and weather alerts to your phone or other devices to keep you as informed as possible.
Make Sure Others Are Aware. Be proactive. Contact your local emergency responders (do not call 911, but their non-emergency contact number) to inform them of your condition and what special requirements you might need in the case of an emergency. You should also contact your local or county emergency preparedness office to register with them as they may also have information that could be helpful in case of any emergency.
Be Ready to “Go.” Have a plan in place on how to get out of your home quickly if needed that matches your movement abilities. If your movement abilities change over time, reassess your plan to make sure it is still workable. Have everyone in the household practice the plan at least twice a year, and more frequently if the plan has changed.
In the event of a natural disaster, you may be under a mandatory evacuation order or otherwise find it necessary to leave your home and community for safety reasons. This also requires more planning for people living with ALS.
“Be sure to think to listen to the radio or television for the location of emergency shelters and make note of which of those shelters would be accessible for people living with a disability,” Michelle said. “Confirm when you arrive at a community shelter that they are prepared to meet your needs.”
Prepare a “Go Bag.” Have necessities at the ready in case you need to leave quickly. In addition to items anyone might need in an emergency, your “Go Bag” should include your important ALS-specific items and information, including:
- Information explaining your medical condition. We have developed a set of helpful tools to download and order free of charge to help you provide a comprehensive medical overview regarding specific issues related to ALS care, and how your issues can most appropriately be addressed. “A lot of this information could be stored in your cell phone or on your laptop,” Michelle said. “But it's really a great idea to also have a printed copy, maybe keeping it in a Ziploc bag in a waterproof storage.”
- Include a seven-day supply of any medications you take, as well as information on who to contact to get more if needed.
- In addition to being sure your emergency health information explains your best method of communication, you’ll want to include back up batteries or chargers for any adaptive communication devices you may use, as well as a backup letterboard or other “old school” communication options for use if needed due to lack of power.
- You might also want to include what Michelle calls your “Support Network” contact information of family, friends, relatives, neighbors or co-workers who could assist you at a moment's notice if needed. “Who could you call on to run an errand for you or complete a task? Who could someone else contact to get help for you if you couldn't communicate—someone reliable, someone who is familiar with you and your needs,” she said.
Be Ready to “Stay.” Sometimes an emergency situation will require you to stay in your home or “shelter in place” for the duration of the event, which can present its own challenges. As with your plan to get out of your home quickly if needed, you will want a plan to best shelter in your home if required. Often a basement is the suggested place to do so, but if mobility challenges make it difficult for you to access a basement, determine where else might be appropriate, such as an interior bathroom or closet.
Also, be aware that a shelter in place situation might last a while. “Think about what sort of supplies you need for an hour, for a day, or longer, and where you would store them so that you would be able to access them when needed,” Michelle said. “You may need to reassess this seasonally. And then finally know how to connect and start backup power if you have it to supply your emergency medical or your essential medical equipment.”
You should also contact your local electric service provider and register your household as having an occupant requiring electricity for medical devices, which may include providing documentation of the equipment and your condition. This helps power companies prioritize outage restoration in times of crisis.
Preparing for an emergency can begin to feel as overwhelming as an emergency itself. If so, Michelle suggests breaking down the task into smaller, manageable lists to make it less intimidating. While we all hope our planning never has to be put to use, being as prepared as possible can bring some peace of mind if and when an emergency does arise.
For additional information and help identifying resources in your community, please reach out to your local ALS care team.
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