10 Ways to Help Prepare for an Emergency While Living With ALS

emergency and natural disaster preparedness

Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present an even greater challenge. With the kickoff of hurricane season and the beginning of summer heat and storms, it’s more important than ever to make sure you are prepared.

Here are some ideas and things to think about to help keep you and your family safe in case of an emergency or a natural disaster.

Contact your local electric service operator to register the household as having an occupant requiring electricity for medical devices. This may include providing documentation of the equipment and disability. This helps power companies prioritize outage restoration in times of crisis.

Contact your local or county emergency preparedness office. Ideally, families with significant mobility or respiratory challenges have already registered with their local or county emergency preparedness office, indicating their specific unique needs in the event of evacuation or the need to proactively move to an adequate shelter. Regular shelters may not have the electrical service or additional staff required for people using power wheelchairs or any medical equipment requiring electricity, and COVID-19 may have altered your community’s plans. The Red Cross is a great resource for finding local shelters in your area. 

Do your research. Understand what kinds of disasters (especially weather/natural disasters) could happen in your area and sign up for alerts from FEMA or local weather sources. These alerts can be directly texted to a cell phone, a Facebook or Twitter account, or your home phone number.

Identify evacuation routes from your location. Identify safe places to go and remember that in the event of a natural disaster, you may be under mandatory evacuation. Should this occur and you don’t have accessible transportation, call your local police department, and inform them of your situation.

Prepare a “go bag.” Keep a disaster supply kit in your home, car, workplace or anywhere you may spend your time. Include such items as food, water, a first aid kit, letter or picture board, adaptive equipment, and batteries. If you cannot speak, attach a small recorder (like those found on key chains) on the outside of the bag. The recording should say something like “My name is ____. I cannot speak. I communicate by ______. In case of emergency, please call _____.”

Create a list of your network. Complete a personal assessment of your support network of family, friends, relatives, neighbors, roommates and co-workers who could assist you at a moment’s notice complete with contact information. Always keep this list handy, including a printed version in case of power loss.

Create an “In Case of Emergency” information list. Make an emergency information list so others will know who to contact if they find you unconscious, unable to speak, or if they need to help you evacuate quickly.

Medical Information Packet

Assemble and organize your medical information. The ALS Association website provides 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.

  • Prepare a Medical Information Packet which allows you to provide critical medical information regarding specific issues related to ALS care, and how your issues can most appropriately be addressed. Once completed, this packet will contain the names and numbers of your doctors, your medications, dosage instructions, and any existing conditions you may have. Make note of your adaptive equipment, allergies, and any communication difficulties. It is recommended this be on paper in case there is no access to a computer or electricity. 
  • Carry a Medical Information Pocket “Z” Card at all times. This card provides a brief summary of critical ALS issues, including a mini-letter board, which can be folded and kept in a wallet. A Medical Information Packet Printable Eye Gaze Board is also helpful to provide rapid access to low tech communication. 
  • Download our Key Medical Information mobile app to your phone. This app provides medical personnel with critical information to care for a person living with ALS during an emergency. In addition to medical dos and don’ts, the app provides a communication board and emergency contact fields for users to reference. The app is available in Google Play and the Apple Store and is searchable by “Key Medical Information” or “The ALS Association.”
  • Watch our Emergency Preparedness Webinar. Designed to answer questions you may not have even thought of, this resource shares important tips on how to be prepared for any urgent situations whether it’s personal or family health issues, weather, or environmental conditions.

Prepare a medication supply. Keep at least a seven-day supply of medications on hand and ask your doctor or pharmacist what you should do if you cannot immediately get more.

And finally, be informed. There are various web sites and telephone numbers to help with emergency preparedness and keeping you and your family safe during difficult times. Consider saving some important websites that provide additional local resources should you be faced with an emergency such as the Red Cross and FEMA which also has specialized information for individuals living with disabilities.

It is critical that people living with ALS and their family members be proactive and make plans to protect themselves in the event of a disaster. Making the conscious decision to be prepared takes work, but it is worth it. The more you do, the more confident you will be that you can protect yourself if and when the time comes.

For additional information and help identifying local resources, please reach out to the team at your local ALS Association chapter.

For more information and resources, visit als.org. To continue to follow stories from people in the ALS community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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