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By the time Hurricane Rita forced the evacuation of her hometown of Estherwood, La., Mary Guidry had reached the very end of her rope. Her husband, Timmy, whom she cared for at home, depended on a ventilator, a feeding pump, a hospital bed and an uninterrupted supply of electricity just to stay alive. Five hundred pounds in his wheelchair, Timmy could not be transported without nursing aid and a generator, and ambulances were not being dispatched in the high winds. Hospitals Mary called would not accept him in advance of other evacuees, then refused him because their beds filled up with more acutely ill patients. Emergency shelters turned him away because he was on a ventilator.
I honestly thought this might be the end, Mary says of her husband, who is in the end stages of amyotrophic lateral sclerosis (known as Lou Gehrig's disease). In a disaster, those of us who have chosen to care for loved ones at home really fall through the cracks.
While evacuations are difficult for everyone, patients with neurological conditions and their caregivers face even greater challenges. Sleep deprivation, missed meals and excessive stress can exacerbate certain conditions like seizures and migraines, and can place patients at risk for more serious health problems.
What can you do to avoid undue anxiety and potential complications? Get ready now. Here's how.
In the days after Hurricane Katrina hit, Kenneth A. Gaddis, M.D., a neurologist at Thibodaux Regional Medical Center, triaged patients transferred from nearby New Orleans. Many of them arrived with only the clothes on their backs. Others who had tried to come prepared clearly hadn't thought it through. One patient came to the emergency room with all of her medicines in one bottle, congealed into a sticky mess, recalls Dr. Gaddis.
Marc Nuwer, M.D., Ph.D., a neurologist at the University of California-Los Angeles and a veteran of many earthquakes, urges his patients to organize a trip bag with a three-week stash of prescription medication, over-the-counter drugs and related supplies like syringes, needles and alcohol wipes. A major disaster could disrupt commerce and emergency services at any time, making it impossible to get what you need, he cautions, adding that many insurance carriers are willing to cover the costs of prescriptions for such eventualities in advance.
Remember to use airtight, watertight and light-resistant containers. For medications that normally require refrigeration (like insulin and beta-interferons), ask a pharmacist if there are alternative preparations. Mary Guidry, for example, had a pharmacy prepare the anti-anxiety drug lorazepam (Ativan) in a formulation that didn't need to be kept in ice packs in a cooler.
Doctors who treated people at shelters and area hospitals after Katrina had a doubly difficult task, because most patients did not have any records and were too sick to provide a verbal history.
The U.S. Surgeon General, Vice Admiral Richard H. Carmona, M.D. - who toured the areas - advises that anyone suffering from a neurological condition create a synopsis of major diagnoses, medications, doctors, pharmacies and relevant phone numbers to show healthcare workers in emergencies. That's the only way to ensure you receive the proper care when you need it most, he says.
Patients and caregivers should work closely with their doctors to create such a synopsis. And they should make sure it remains up-to-date and easily accessible in emergency conditions. Harry J. Gould III, M.D., Ph.D., a pain-management specialist in New Orleans who'd been in the habit of writing down medication lists for his patients, noticed that when evacuees arrived with medical information on paper, the summaries were often wet and illegible. He thus recommends storing critical information on computerized plastic smart cards. In fact, patients who computerize their medical records along with other important documents (insurance papers, advance directives, etc.) are far more likely to keep them safe and accessible.
MedicAlert, the company that pioneered the bracelet engraved with personal ID number and condition, maintains detailed patient medical files on its secure database for a $35 membership with annual $20 renewals. That gives doctors quick access through a 24-hour hotline for its 2.4 million members, many with seizure disorders, Alzheimer's or Parkinson's.
And now MedicAlert has released an improved version of its E-HealthKEY, a special USB flash drive that can preserve all this information for an additional $50 fee. Patients can work with their doctors to add materials to their comprehensive medical records - including digitized copies of brain scans, X-rays, electrocardiograms and diagnostic reports - in an encrypted, password-protected form. When any doctor plugs the E-HealthKEY into any personal computer's USB port, the patient's critical data pops up for instant viewing. And in case the flash drive gets lost or forgotten, the data is uploaded to MedicAlert's server as a backup.
In planning what you will need in case of evacuation, Dr. Gaddis suggests, Just think of being marooned on an island, without the ability to restock.
That means putting aside at least a three-day supply of water and food for each person. And not just at home: you may well be caught at work. Dr. Nuwer stows a 55-gallon barrel with drinking water, canned and dried food for a week, clothes, blankets, flashlights, a generator, a radio, extra batteries and, of course, a first-aid kit.
Old-fashioned telephones that don't require electricity can give you a lifeline to loved ones and the outside world even when power outages render cordless phones useless. Cell phones programmed with important numbers can also be lifesavers.
Most critically, patients who are dependent on electricity should have not only a generator on hand but also battery backups that make devices portable. Timmy Guidry's ventilator came equipped with a battery as a backup to electricity failures, and Mary had rigged a boat battery to take over for periods when she was setting up the generator.
Because so many essentials cannot be purchased when the electrical grid is down, it's also a good idea to have cash on hand. Gas, food and shelter are hard to come by otherwise - something thousands learned when Hurricane Katrina so disabled the financial infrastructure that ATMs and credit cards wouldn't work and even more people discovered after Hurricane Wilma crippled southern Florida. If the 2003 eight-state blackout was a wake-up call, Katrina and the subsequent hurricanes provide dire reminders.
Don't wait for a catastrophe, Surgeon General Carmona warns. Make sure that you have thought through how you will get out of your house, where you'll go and whether you will drive, take a train or fly.
He suggests you ask your emergency response agency, fire department and other local organizations to help you create an evacuation strategy and practice it. That way, he says, when the time comes to leave in a hurry, you don't have to slow down and think.
Mary Guidry couldn't agree more. When Hurricane Lilly struck in 2002, she found herself packing up her family and driving the interstates at 10 p.m., having made the decision to drive 100 miles to her mother's at the very last minute. Making last-minute phone calls to area hospitals during Rita was even worse, as no one offered her a destination for her husband until he eventually got a bed at Ville Platte Medical Center.
That experience spurred Mary to work with the Louisiana Chapter of the ALS Association to plan every step of the next evacuation. I do not want to have to send my husband to a nursing home, because I want to surround him with the family that loves him, she says. But I cannot go through another ordeal like Rita.