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Emergency Preparedness for People with ALS

By Alisa Brownlee, ATP

Emergencies and disasters can strike quickly and without warning, forcing people to leave or be confined in their home. For the thousands of Americans with ALS, emergencies such as fires, floods and acts of nature present a real challenge. It is important that people with ALS and their family members make plans to protect themselves in the event of a disaster. This needs to be addressed not only at home, but also when away from home, such as at work or on vacation.

First Step:  Make the conscious decision to be prepared.  It takes work, but it is worth it! The more you do, the more confident you will be that you can protect yourself when the time comes.

Second Step:  Make a plan.  The plan should include: 

1) Know what kinds of disasters (especially weather/natural disasters) could happen in your area and consider what your environment might look like after one occurs.

2) Complete a personal assessment and personal support network of family, friends, relatives, neighbors, roommates and co-workers who could assist you at a moment's notice.

3) Make an emergency information list so others will know whom to call if they find you unconscious, unable to speak or if they need to help you evacuate quickly.

5) Compile a medical information list that contains the names and numbers of your doctors, your medications, dosage instructions, and any existing conditions. Make note of your adaptive equipment, allergies, and any communication difficulties you may have.

6) Keep at least a seven-day supply of medications on hand. Ask your doctor or pharmacist what you should do if you cannot immediately get more.

7) Identify evacuation routes and safe places to go during a disaster.

8) Keep a disaster supply (also known as a “go bag”) kit in your home, car, workplace or anywhere you may spend your time. Include such items as food, feeding supplies (formula if you have a feeding tube), water, a first aid kit, adaptive equipment, communication board and batteries.

9) Show others how to operate your wheelchair (if possible, have a manual chair as a backup) or other assistive devices.

10) Work with local transportation and disability services (e.g., Paratransit, Independent Living Centers) to plan ahead for accessible transportation if you may need that for evacuation or other reasons during a disaster.

16) Keep in mind that during an emergency, you may need to explain to first responders and emergency officials that you need to evacuate and shelter with your family, service animal, caregiver, or personal assistance provider so they can provide the support you need to maintain your health, safety and independence.

Third Step:  Be informed.  Here are a few website with helpful emergency preparedness information:

Prepare for Emergencies Now: Information for People with Disabilities
http://www.ready.gov/sites/default/files/FEMA_Disabilities_R-6_web_june2012.pdf

Preparing Makes Sense for People with Disabilities and Other Access and Functional Needs
http://www.fema.gov/medialibrary/media_records/7028

People with Disabilities
http://www.redcross.org/prepare/location/home-family/disabilities

Individuals with Disabilities or Access & Functional Needs
http://www.ready.gov/individuals-access-functional-needs

June 01, 2014

The ALS Association - 1275 K Street NW - Suite 250 - Washington, DC 20005
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Lou Gehrig® used with permission of the Rip Van Winkle Foundation / www.LouGehrig.com