Emergency Prep for People with Neuromuscular Disease

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As storm season whips up, it’s wise to take stock of your emergency plan, especially if your mobility is limited.

Two veterans of weather emergencies — Barbara Twardowski of Mandeville, La. (who has Charcot-Marie-Tooth disease and uses a power chair) and Shelley Obrand of Davie, Fla. (who has a nonspecific form of muscular dystrophy and uses a power chair and respiratory assistance device) — offer these tips.

• Designate a contact person who lives far away from you, so if telephone service is knocked out in your area there still is someone to coordinate information on people’s whereabouts.
• If you’re evacuating, bring the assistive equipment that makes your life easier. During Hurricane Katrina, many people, thinking they would go home soon, left behind wheelchairs, canes, walkers and other items, says Twardowski, who dearly missed her tub transfer bench and portable ramp during her months away from home.
• If you don’t have power but other areas do, pay an extended visit to an air-conditioned mall or store. During Hurricane Katrina, Obrand even brought along her BiPAP and plugged it in at a helpful shop.
• Contact your local electric power company to ensure you’re on a priority list for power restoration.
• Get to know your local fire fighters. “Drop by, say ‘hi, I’m here,’ and get a relationship going,” Obrand advises. “Sometimes they may ask you to do talks for other fire fighters.” The International Association of Fire Fighters is MDA’s largest sponsor, and fire fighters across the country work closely with MDA programs.
• Don’t be ashamed to ask for or receive help.

Read more about emergency prep for people with disabilities:

Preparing for Emergencies: A Checklist for People with Neuromuscular Disease
This detailed checklist also is available in Spanish.

One of several gaping holes in the Twardowski's roof.

Plan Ahead for Emergencies (of special interest to parents)
The mother of two daughters with spinal muscular atrophy describes how her emergency plan kicked in when one of her daughters had to be rushed to the hospital while the other was still at school.

Shelter in a Storm
Learn your city’s emergency evacuation plan for people with disabilities, advises this article, which also discusses evacuation, building a support network and safe rooms.

Tell 911 You Have ALS (for people who speak indistinctly)
“We’d planned for the times when I would need to call 911 for him, but we never thought about what would happen if he had to call 911 for me,” says Velma Yannayon, of Eastanollee, Ga., whose husband has slurred speech due to ALS. This became an issue when Yannayon had her own sudden medical emergency.

What Will You Do if the Power Goes Out? (for respiratory equipment users)
Heavy storms often cause power outages — not a comforting thought for people who rely on electrically powered equipment to breathe. Fortunately, there are a variety of back-up power options that can be used.

Emergency Roadside Assistance for Wheelchair Users
One in four people experience a roadside emergency each year. For people who use wheelchairs, this can be particularly difficult. ADA Nationwide Roadside Assistance provides emergency assistance tailored to the needs of people who use mobility devices and their modified vehicles, for an annual membership fee of $140.

Fun with Frances: Tales from an Emergency Pet Shelter
When a woman with ALS and her family were evacuated from their home during Hurricane Frances, they went to a shelter that would accept their pets. It was an “interesting” experience.