A topical reminder to prepare for a disaster while living with MS

Healthcare professionals as well as patients should consider steps in advance

by Ed Tobias | August 18, 2023

By now, I’m sure you’ve seen the pictures of the wildfires that charred Maui, Hawaii. As I write this, a week after the blaze, The Associated Press reports that more than 100 people have been killed, and the governor expects “scores more.” Some neighborhoods are gone. People literally ran from the flames.

But my multiple sclerosis (MS) makes running impossible, and walking unlikely. Watching video of the fire leaping from house to house, I thought, “What would I do?” A hurricane, a tornado, a blizzard, or even just an extended power outage can leave someone like me in a difficult, and possibly life-threatening, situation.

A few years ago, I wrote a column asking “Is Your MS Ready for a Disaster?” Is yours? 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?

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Plans for people with MS

Researchers at the University of Miami’s Leonard M. Miller School of Medicine have considered that question — specifically regarding people with MS and hurricanes — and are proposing guidelines that healthcare professionals can use to help their MS patients create disaster plans.

The guidelines, published this year in 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 hurricane.

They also advise finding at least three neighbors 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’d be used to carry an MS patient down the stairs in the event elevators aren’t working.

Registering in advance with local governments for evacuation assistance and medical shelters is another suggestion. (Registration is required for a special needs shelter in Florida.) And there are the usual recommendations to keep several days of food, water, and medication on hand.

What’s new, and great, is having healthcare professionals work with their patients to develop these plans.

It almost happened to me

I had a close call with a Category 5 hurricane a little less than a year ago, when the eye of Hurricane Ian came ashore over the small Florida town where my wife and I spend seven months of the year.

Fortunately, we were in Maryland at the time. Also fortunately, our apartment had relatively little damage. But our community had significant destruction. Able-bodied neighbors who decided to ride out the storm swear they’ll never do it again. I don’t think we would’ve survived if we’d been there and opted to stay.

The only option for us, and for our cat and dog, is to evacuate well in advance of a storm. We have locations picked out and know what we’ll take. We couldn’t have survived four days with no power (or air conditioning) and two days without water, nor could we have made it down three flights of stairs to get to an outside propane grill to cook.

And the storm doesn’t end after the sun comes out. Recovering from a hurricane — or any disaster, for that matter — can be expensive, and it may take a long time for an insurance company to pay a claim. According to the Florida Office of Insurance Regulation, many claims for Ian damage have never been paid.

Has your healthcare provider had a disaster talk with you?

In their guidelines, the University of Miami researchers write:

“It is increasingly important to assist persons with MS in their readiness for such catastrophic storms. Health care providers are well-positioned to help their patients with MS identify their needs in the event of a disaster and take appropriate steps to improve their emergency preparedness. Moreover, [healthcare providers] are essential in ensuring that the needs of their patients are met in a storm’s aftermath.”

Indeed they are, but I wonder how many have considered the role that they can, and should, play in mitigating a disaster’s effects on their patients. I don’t know if these guidelines would’ve helped someone with MS prepare for the fires in Hawaii, but I bet they’ll help in preparing for the next hurricane.

You’re invited to visit my personal blog at www.themswire.com.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Trish Nafotz

Fires, hurricanes, rockets from Gaza and bullets from machine guns on the street: Even healthy people can't outrun them, but I've certainly learned to rethink my methods and chances of coping with the rocket attacks since a quick dash to a shelter is no longer an option.

Ed Tobias

Hi Trish -

I never thought about the need to avoid rockets and machine gun fire. I guess it's hard to prepare for them, other than having increases situational awareness and a plan for what, if anything, you can do if you can't dash into a shelter. It's too bad we have to think about man-made disasters as well as natural ones.

Joni Z

Ed,
Thank you for this article.

I was diagnosed at 56 years old but had my 1st attack
(Optic Neuritis) in 2000. I was 39 years old and not diagnosed
with MS until 17 years later. For the 1st 4 years I told no one,
except for my husband Ed, and my 2 adult children.

I’ve done stem cell therapy 3 times and Hyperbaric Oxygen Therapy
4 times. I do a series of 20 HBOT dives, once per year.
The HBOT helps tremendously. Bottom line is that I’ve been in denial about this disease for so long, that it’s wearing me out.
I live in NE Florida and this summers heat has kicked my butt.

I’ve also been a top producing Realtor in my area since 2004.
The last 3 years have REALLY slowed me down. I keep fighting
and very few of my clients know I have MS. But I’m getting tired.
I’ve googled 2nd careers for MS patients but all that I’ve found is
so much less than I’ve done, earned, and still want to achieve.

Any inspiration would be greatly appreciated.
Many thanks,
Joni

PS and I WILL prepare for the next hurricane!

Ed Tobias

Hi Joni,

I'm sorry you've had these problems. It sounds as if you've been using alternative treatments but have not use traditional medications. (Stem cell therapy, I guess you know, isn't the same as a stem cell transplant. The therapy has not been shown to be effective against MS.)

There are many disease-modifying treatments that can slow your disease. Some also have reduced the severity of some symptoms. There are also meds that can reduce fatigue. I've also found that exercise and/or physical therapy can also help do that.

Rather than looking for another career, I'd like to inspire you to look for a neurologist who specializes in MS and work out a plan to actually be treated for your illness. You wouldn't be a top producing realtor if you weren't smart and driven. It's time to use those abilities to improve your health. Please do this before your MS gets worse. It's probably more important than preparing for a hurricane.

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A topical reminder to prepare for a disaster while living with MS