What does a hurricane have to do with my multiple sclerosis (MS)?
Watching the season’s first major hurricane blow its way up the east coast of the U.S. a couple of weeks ago, and now in the heart of the Atlantic hurricane season, I’m thinking back three years to Hurricane Ian. In September, 2022 Ian slammed into southwest Florida, its eye passing right over the community where my wife and I spend the winter. We hadn’t yet made the trip down from the north, but we watched the Weather Channel’s Jim Cantore reporting from our town. When Jim’s in your town you know it’s in big-time weather trouble.
If we had been in Florida, what would we have done? Where would we have gone? Would we have hunkered down and hoped for the best or would we have evacuated? Tough enough questions for someone who is able bodied but wrenching for someone, like me, handicapped by MS. My wife also has trouble getting around, due to back problems. We’d be a disaster in a disaster. We needed a plan. If you have a handicap, you do too. And not just for hurricanes. Earthquakes, tornadoes, major brush fires, chemical plant explosions, freight train derailments, or even an extended power outage could send you fleeing.
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What to do?
Is Your MS Ready for a disaster? It’s a question that everyone whose mobility is impaired — or who’s just in need of regular medical assistance — should consider. If you had to evacuate your home or office, how would you do it, where would you go, and how would you get there? And what if you couldn’t evacuate? In Florida, some of our able-bodied neighbors decided to ride out Hurricane Ian and they swear they’ll never do it again.
Researchers at the University of Miami’s Leonard M. Miller School of Medicine considered this problem and have suggestions about what to do and, in particular, how healthcare providers can work with MS patients to help plan for disaster.
Their guidelines, published in the July 2023 issue of the International Journal of MS Care, consider more than a dozen areas of concern, including mobility problems, cognitive and sensory impairments, the potential for MS relapses, financial problems, and the likelihood that healthcare systems will be disrupted during a major storm. They include finding at least three neighbors who are willing and able to help during a disaster, having a standard wheelchair available to replace a scooter or power chair during a power failure, and buying an evacuation chair, which is similar to the small chair sometimes used to help a person with a disability board an aircraft. It would be used to carry an MS patient down the stairs in the event elevators aren’t working. There are also recommendations you’ve probably already heard: keep several days of food, water, and medication on hand.
Registering in advance with local governments for evacuation assistance and medical shelters is something you may not have thought about. Many states, and Florida is one, have special needs shelters, where extra help is available for people with a handicap. But in Florida, and perhaps elsewhere, pre-registration is required to use one of those shelters. The website of the Florida Department of Emergency Management, in fact, cautions that “not every person with a disability is eligible to evacuate to a special needs shelter….some people with disabilities can be safely accommodated in a general population shelter. And, the best place to shelter for every Floridian is: 1) with friends or family; 2) in a safe structure; and 3) outside of the evacuation area.”
Are you prepared?
In their article, the University of Miami researchers say “physicians, advanced practice providers, nurses, social workers, therapists, and psychologists can all play critical roles in helping their patients with MS improve their storm readiness and in ensuring that their needs are met after a disaster.” I think that sort of discussion is worthy of exam room time. But is it happening?
If you’re a person with MS have you ever raised the issue with your doctor or MS nurse?
If you’re a healthcare professional have you ever discussed disaster preparedness with a patient? Are you also prepared to help those patients post-disaster, when they may need help replacing lost medications and/or damaged medical devices.
Is your MS ready for a disaster?
(A version of this post first appeared on the Rare Disease Advisor website)
