Winter Weather Safety Tips for Neuromuscular Diseases

Extreme winter weather wreaks havoc on everyone’s routines, but it is especially disruptive for people with neuromuscular diseases. Many have balance or mobility issues that are made more challenging by wind, snow, and ice. Others rely on electricity to power a wheelchair or respiratory device.

In recent years, even regions of our country that aren’t known for cold weather have endured widespread power outages and dangerously icy roads. Millions of Texans experienced this firsthand during the winter storm of February 2021. “It got cold here, and our infrastructure wasn’t set up for that type of weather, so our power went out for about a week,” says Roger Lopez, a former Safety Officer for the San Antonio Fire Department and current National Coordinator between the International Association of Fire Fighters and MDA.

During a winter weather event, access to needed resources and the ability to use medical and mobility equipment are jeopardized. Sometimes, it impacts even more fundamental needs, like shelter and warmth. “Making sure people with neuromuscular diseases stay warm is important,” Roger says. That’s because muscle loss and immobility make it harder for the body to generate heat.

Here are five essential tips for people with neuromuscular diseases and their caregivers to prepare for winter weather emergencies.

1. Sign up for emergency alerts.

Your school, workplace, or local community may have phone or email alert systems that notify people of weather-related closures and emergency plans, including warming centers. Roger encourages people to sign up for text messages to ensure they see these alerts and can act quickly.

2. Contact local services in advance.

Call 311, the nonemergency assistance number, to contact your local police, fire, and emergency services and let them know about your medical condition, essential medications, and any allergies. Also tell them if you use special medical equipment or oxygen canisters and where to find those in your home. The dispatch center can keep this information in a file connected to your address and share it with emergency services should the need arise.

Display essential medical information in an easily accessible spot in your home, like the front of the refrigerator. This will expedite getting the help you need if you or a caregiver can’t explain your medical needs to emergency responders.

Also, alert your power company if you use a ventilator, power wheelchair, or other electronic medical device. In case of an outage, they may be able to prioritize restoring power to your home.

If you work in an office, talk with your supervisor about emergency plans and mention any concerns or needs. You may want to store a manual wheelchair or backup wheelchair battery at work in case of an emergency.

3. Stock up on medications and emergency supplies.

You may not be able to leave your home during a winter storm. Keep enough extra medication, drinking water, and nonperishable food on hand to last several days in case you’re snowed in.

Remember that if you have an electric stove or can opener, you won’t be able to use those during a power outage. Shelf-stable foods that don’t require heat include:

• Canned tuna or sardines (a pull top doesn’t require a can opener)
• Crackers
• Protein bars
• Nuts and dried fruits

On the other hand, if you need to evacuate, have your medications and an emergency kit ready to grab and go. Your winter emergency kit should include:

• Backup battery for a power wheelchair or other medical equipment
• Flashlight
• Battery-powered radio
• Extra batteries
• Cell phone charger
• Blankets
• Hand and foot warmers

4. Check smoke and carbon monoxide detectors regularly.

Many people use space heaters or generators to keep warm during the winter. But without proper ventilation, these devices can create the risk of fire or carbon monoxide poisoning. This is especially dangerous during a weather event when emergency services are overtaxed and may not be able to respond quickly.

“Any type of energy-producing device is going to produce carbon monoxide, which is not detectable to human senses,” Roger says. Running a vehicle in the garage to keep warm or charge devices also creates carbon monoxide risk.

Test smoke and carbon monoxide detectors at least once a month and replace the batteries at least twice a year unless you have a recent model with long-lasting batteries. “Every time you change your clocks for daylight savings, change your battery,” Roger recommends.

5. Plan your escape route.

In case of a fire or other emergency, you should have at least two ways to exit your home and get to safety. If you use a wheelchair, there should be more than one accessible exit in case the main exit isn’t safe.

“During a winter storm, if you can leave the house and go somewhere else, like a warming center in a library or school gym, that’s probably one of your better bets,” Roger says. If you can’t leave, being stocked up on medications and emergency supplies will see you through.

Everyone hopes emergency plans and measures won’t be necessary. However, being prepared gives you and your caregivers peace of mind no matter what winter throws at you.

Susan Johnston Taylor writes about health and general interest topics.

Be Prepared

Be ready for anything with these MDA resources

Webinar: Preparing for Emergencies

This webinar covers how to make an emergency plan, how to build an emergency kit, and other ways to prepare for many types of emergencies. youtube.com/watch?v=OI0x41Mm3-0

Downloadable guide: Emergency Preparedness for People with Disabilities

This guide provides helpful lists of what to do before, during, and after natural disasters and other emergencies. mda.org/emergency-preparedness-with-disabilities

Checklist: Preparing for Emergencies, A Checklist for People with Neuromuscular Diseases

Use this checklist to help you prepare an emergency plan that will protect you and your loved ones. mda.org/emergency-checklist

Wallet cards: Emergency Room Alert Cards

Disease-specific Emergency Room Alert Cards detail precautions needed in a medical emergency for people with amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD), and myasthenia gravis (MG). They can be printed and folded to fit conveniently in a wallet or purse. The Emergency Room Alert Summary is designed to be filled out with specifics on any neuromuscular disease. Find them under “Emergency Care Resources” at mda.org/education.