KATRINA SENDS PEOPLE SERVED BY MDA SCRAMBLING FOR HELP

Updated Dec. 21, 2005

by Christina Medvescek

When Hurricane Katrina attacked the Gulf Coast at the end of August, approximately 3,000 people registered with MDA were trapped in its path. The stories below are from a few of these people, as well as other MDA families and staff who became caught, in one way or another, in the swirl of the storm.

MDA offices across the country have provided services and assistance to hurricane refugees.

Hoping for Home
JOHN HEBERT
Chalmette, La.
Charcot-Marie-Tooth disease (CMT)
Sept. 7

“Everything I’ve worked for my whole life is gone. I got out with some clothes and my car.”

A week after Katrina struck and levees broke, Hebert (“ay-bear”) still is dazed by the rapid turn of events in his life. The 49-year-old former trucker and machinist evacuated his lifelong home southeast of New Orleans fully expecting to return in a few days and “get on with my life.” But now his house is under water and he’s holed up in a hotel room in Birmingham, Ala., trying to figure out where to go.

Hebert is able to walk some and uses a manual wheelchair for distances. But he left his chair behind when he evacuated, figuring he wouldn’t need it while sitting in a hotel room for a day or two. Now his ankle-foot braces have worn blisters on his feet from walking around town searching for long-term housing — or at least a more accessible hotel room.

When it became clear he wouldn’t be able to go home for weeks or months, Hebert called MDA for help. In addition to giving him housing referrals, Regional Director Beth Grimes found him a used manual wheelchair and made an appointment to have his braces adjusted and repaired.

“MDA helped me back in New Orleans, and I knew they would be there for me up here, too,” he says. “It’s always good to have a shoulder to lean on.”

Hebert says he’s luckier than many because he has a monthly SSDI (disability) check, and his flood insurance will pay for up to a year of living expenses.

But at the moment, not even sure where the other members of his family are, it’s hard to look on the bright side.

“I’ve done a lot of crying,” he admits. “I don’t know where I’ll end up or what I’ll do. I don’t know how I’m going to live day by day. I have the want to go out and get a job and better myself. I’ve always lived right. But I can’t work.… Hopefully, I’ll one day be able to get back home.”

Oct. 21, 2005

Some 40 days later, Hebert isn’t home yet. He’s “living just about normal” in a Birmingham apartment, and still hoping a day will come when he’ll be able to rebuild in Chalmette, in heavily flooded St. Bernard Parish.

He finally saw his home in mid-October, and found that the water had risen to within 6 inches of the second story. “Mold is climbing up the walls,” he says. His flood insurance policy will pay full value for his home, but so far he hasn’t seen a penny. “Thank God for good credit,” he says, as well as some money from FEMA.

His CMT has become more problematic, especially wearing his braces, due to sores and rashes. “I don’t know if it was because of the hurricane, but I haven’t been straight since when I was back home,” he muses.

Uncertainty rules. “I want to go back home eventually but I don’t know when that’ll happen,” he says patiently.

“Nobody is rebuilding until the government puts in a better levee system. I’m not going to invest my money in my house until they do get a better levee system. And State Farm just said they’re not going to accept any more policies there. So everything is really up in the air. I may have to stay up here. I don’t know how long it will take before things get straight in Louisiana.”

Although safe he’s also “bored to death. I can’t get around like I used to. Back home, I was known, I always had somebody call me, ‘hey, how you doin’?’ Here I don’t know nobody. I don’t know where anybody is. It’s rough. I’m sitting home a lot.”

Time to Go
DAMIAN AND FABIAN WALTON
New Orleans
Limb-girdle muscular dystrophy (LGMD)
Sept. 8

An intuition came over Damian, 30, as he was packing to evacuate, the clear thought that “I might just have to pick up and move on for good. In case that’s so, I want to be prepared to do it. ” So he packed all the clothes that he owned in two duffles, as did his brother Fabian, 27. The family packed up blankets, nonperishable food and other essential items.

Leaving was physically difficult. The brothers’ mother, Rhonda Toy, has carpal tunnel syndrome, a herniated disk and recently broke her hand. Damian, a full-time wheelchair user who also has emphysema, needed to be lifted to transfer into her Ford Expedition “and that was extra hard” on his mother.

Their first stop was their grandfather’s house down the street, where they formed a four-car convoy with their grandfather, uncle, “aunty” and two cousins. They considered going to the Superdome, but decided instead to call in a reservation to a Marriott Residence Inn near Houston. They left at 7:30 a.m. on Sunday, the day before the storm hit, and arrived about midnight.

As the scope of the storm’s aftermath became apparent, the family turned to the search for long-term housing and support. One need was for better assistive equipment. Damian’s manual chair is so beat up it doesn’t even have a hand rim, and Fabian is unable to walk the great distances required to live in a Texas city. Houston MDA Health Care Services Coordinator Anne Swisher contacted vendors to get Damian a power chair and Fabian a scooter, but the brothers haven’t connected yet with the vendor, due to the busyness of registering with the proper agencies and finding a place to live.

“For the past few days, it’s been, how to say it — surreal,” Damian says. “I can’t believe New Orleans is gone, Mardi Gras is gone. Everything’s gone.

“I don’t want to go back. I’m scared of the threat of losing everything. I’ve had a surreal realization, that I’ve got to pick up and move on. I’ll be taken care of.

“The people of Texas, I thank them for everything they’ve done for us. One thing we’ve talked about is that this hurricane brought out the very worst of people and the very, very best out of people, and that is the more joyful of that. I had to get away from the bad news on TV and just think about it. I realized I have to just let it go and move on.”

Dec. 21, 2005

“We’re looking forward to 2006, and really praying and hoping things look up.”

Rhonda Toy spoke for herself and sons Damian and Fabian as she looked back on a year of heartbreak and loss, and forward to a brighter future.

The year started with loss, when Rhonda’s mother, the boys’ grandmother, died in May. Then the family lost all their belongings in the flooding that September.

Sitting in Houston watching televised images of their devastated city, they experienced even more pain.

“I cried and cried and cried,” says Rhonda. “It totally broke my heart.” When they started hearing stories of looting and senseless violence, she says, “I was so ashamed I wanted to hide under a rock.”

In October, Rhonda underwent surgery for a tumor on her kidney. Then, on Dec. 2, the family lost Rhonda’s father to a heart attack suffered while being treated for throat cancer.

“It’s been pretty much of a roller coaster for all of us,” Rhonda says. “There’s so much to get over.”

But there are bright spots as well, starting with the continued hospitality of Texans. “We’ve met some beautiful people out here. Everybody has been loving on my family, helping us out,” says Fabian. Social Security expedited payment of a lump sum owed to Rhonda, allowing the family to furnish their Houston apartment, with additional help from the Family to Family organization, friends and strangers.

In general, Houston is much more disability-friendly than New Orleans, Damian says. Their apartment is more accessible, transportation is more reliable and doctors are more responsive, he says. “I’m more independent and can do more things.”

Adds Fabian, “The buses have handicapped lifts and they don’t pass me by, they’re quick to pick me up.” Although not located in the safest part of town, their apartment is close to the subway, bus stop and stores.

MDA helped Damian trade his battered manual chair for a power wheelchair, and got a manual chair for Fabian to use for distances. They also were seen at the MDA clinic in Houston.

As Christmas draws close, the family wants most of all to achieve “emotional healing,” Rhonda says. They intend to stay in Texas rather than return to New Orleans, and are considering a move to San Antonio, where they have friends. Damian is working on adopting a healthier lifestyle, and Fabian is learning Spanish to “get out more to meet more people.”

“Katrina may have been a disaster, a catastrophe,” Rhonda says. “But I still think it was God’s doing.”

Love Pouring In
KATHY AND CODY MILLER
Port Arthur, Texas
Cody, 14, has spinal muscular atrophy (SMA)
Sept. 9

Cody and Kathy Miller

Three large families displaced by Katrina have housing in the Houston area thanks to the herculean efforts of Kathy and Cody Miller and their extended family.

Kathy, Cody, her father, brother and cousin all have worked nonstop to clean, fix up and furnish three rental homes for more than 40 people ages 3 months to 79 years. Kathy co-owns a small retail shop, Victoria’s Closet, with her mother. Her husband is deceased.

Almost two weeks after the hurricane, Kathy was combing the town for discounts on bedding, furniture and appliances. “It’s like pulling a rabbit out of a hat,” she marvels. “Things just happen.”

Merchants who were asked for discounts often give outright donations. Friends call, offering items from their attics. Even strangers get into the act. A minister standing in line at the local Wal-Mart overhead a cell phone conversation about the Millers’ efforts and offered to pay the rent on one of the rental homes.

Kathy and Cody have been buying many of the furnishings themselves, out of money saved for hardwood floors in their home because Cody’s power chair has ruined the carpet. “We were going to adopt a family for Christmas, so now we’ll just do it early,” Kathy explains.

As hurricane refugees moved into their area, the Millers contacted the Houston MDA office offering to share their accessible van if needed, and Cody volunteered to give up his room to another child with SMA.

“I think, if I were in their shoes, how would I handle Cody without any electricity or special bed, no way to plug in a breathing machine,” Kathy says. “In everyday life, we take so much for granted.” (None of the families she has helped resettle are affected by neuromuscular disease, however.)

She’s been working so hard getting rental homes ready and helping make calls to FEMA, HUD and the Red Cross, in addition to running her shop, that she sometimes forgets what she’s already done.

“Early one morning I went to sit on the couch and there was no couch. I gave our couch away,” she laughs. “It’s been crazy. But there’s love that’s pouring in from these people. And at least I’m able to come home today. Look at these people, they can’t go home.”

Oct. 21, 2005

In the wake of Hurricane Rita, the Millers can’t go home either.

“It’s been kinda crazy,” Kathy says with a bitter laugh. “When we were helping the Katrina victims we talked about ‘What would I do in that situation?’ and now guess what -- we’ve been stuck 300 miles away for a month!”

Kathy’s mother’s and brother’s homes were destroyed by the Sept. 24 storm, and their own home suffered serious wind and rain damage. Her uninsured business and Christmas inventory were 75 percent destroyed. Many of the 41 Hurricane Katrina refugees they helped resettle also are homeless again due to storm damage.

Luckily, the Millers were able to find shelter at a Ronald McDonald House in Dallas, and later at a property offered by a doctor at Children’s Medical Center of Dallas.

Their days are full of highs and lows.

The lows: reports of the deaths of two friends, possibly from storm-related stress; realizing the extent of their storm damage; trying to deal with FEMA and insurance agencies.

The highs: all the help they’re getting from people in Dallas; being selected by Southwest Airlines as one of four families to receive a free trip to Los Angeles for a Lakers’ game and a stay at The Beverly Hilton.

“Everything I did (following Hurricane Katrina) just sowed the seeds for this,” she marvels. “We’re really blessed.”

School Must Go On
CHRISTIAN KAY
New Orleans
Limb-girdle muscular dystrophy
Sept. 9

If anything has progressed efficiently in this disaster, it’s the movement of children into local classrooms so they won’t miss the start of the school year. Within a week and a half of arriving in Houston, 13-year-old Christian Kay, his older sister and younger brother were enrolled in classes at local schools.

Christian Kay (left) and his sister Danielle and brother Andrew.

“Pin Oak Middle School has welcomed us with open arms,” says his mom, Maria Kay. “They’ve been very accommodating, very helpful. What’s nice is that it’s a smaller school, and they’ve worked it so all his classes are in one area. They let us park where he doesn’t have to walk real far.”

Although he walks, Christian uses a wheelchair for distances. MDA provided Christian with a loaner chair because the family left his behind when they evacuated, as well as his night splints and walker.

“We never never ever thought this would happen,” says Maria of their exile in Texas. “I told the kids to only take two sets of clothes.”

But now “reality has sunk in.” They know from aerial Internet photos that their home has sustained some damage and flooding. They’ve rented a house in the Houston area, where they have good friends, and Christian’s father, Dennis, a radiologist, commutes from his job at the Ochsner Clinic in New Orleans, which never shut down throughout the hurricane. The outpatient clinic where Maria worked is still under water.

The family isn’t sure how long they’ll have to stay in Texas. At first they heard their local school district would be closed for at least three months, but now they’re hearing it may not open until January 2006.

“The kids really miss their friends,” Maria says. “But they seem to be adjusting.”

Oct. 21, 2005

The Kay family is staying put in the Houston area until the kids’ schools reopen in January. Christian is doing fine at his temporary middle school, despite a couple of bad falls from being jostled in the hallways during passing periods.

“The school has been very responsive and his teachers let him out 5 minutes before the bell rings,” Maria says. “But that’s just the nature of being at a huge school with lots of kids.”

Their home in New Orleans still is uninhabitable due to wind and rain damage, and it’s been tough finding a contractor to do repairs. However, they were able to retrieve Christian’s wheelchair and walker from the house, which has made life a little easier.

Problems Continue
THE SMITH FAMILY*
Coden, Ala.
Charcot-Marie-Tooth disease (CMT)
*(The family asks that their real name not be used for personal reasons.)
Sept. 14

The e-mail to MDA headquarters was poignant. “I am in desperate need of help,” it began, and went on to describe how the Smith family’s mobile home, property and two cars near Bayou La Batre, Ala., had been damaged in the high winds and tidal surge caused by Katrina.

Charlotte Smith and two of her three teenaged children have CMT type 1, and her husband recently received a diagnosis of CMT type 2, following failed back surgery. The Smiths live on Social Security Disability Income. All the family’s assistive equipment — wheelchairs, walkers, canes — was in their two vans when the hurricane swamped them with saltwater. Nine huge trees on their property are down, and their 500-foot driveway is so badly torn up it’s almost impassable.

The family rode out the hurricane in their home, and then endured 10 days without electricity or water. “It was miserable — the heat index rose to 115,” Charlotte says. Her husband drained water from the 40-gallon water heater for them to use.

Slowly things are coming back together — or in some instances coming apart.

On the plus side, MDA’s Montgomery Health Care Services Coordinator Jennifer Young is helping replace their ruined assistive equipment and has gotten Charlotte a clinic appointment. And the family has regained electric power, water, phone, and Internet access, and acquired a rental car.

On the minus side, neither homeowner’s insurance nor FEMA will pay to repair their driveway or get the trees off the property, and they’re unable to do the heavy work themselves. Insurance is only paying $5,000 total for their 1992 and 1995 vans. And even though it seemed at first as though the house escaped serious flooding, in some rooms the ceiling has started to separate from the walls, and chunks of ceiling are falling out, possibly due to a shift in the foundation.

“This is scary,” says Charlotte. “There are so many in devastation. I’ve never seen anything like it.”

Oct. 21, 2005

“We’re ready to move. It’s taken a toll on us physically and mentally, witnessing our damage and others’ damage. There are a lot of people just giving up, walking away.”

Almost two months later, the situation in Bayou Le Batre is better — but not much, Charlotte Smith says. “It’s a sad little town.”

On the plus side, the problems with the Smiths’ home have been, or soon will be, repaired, and they bought a truck to replace their two ruined vehicles. Their homeowners’ insurance has paid off, although for far less than the value of the ruined items in their storage shed.

But the yard remains littered with huge trees, strewn about like pick-up sticks. Three partially felled trees are close to power lines but the power company won’t deal with them until they fall onto the lines and become an immediate problem. Their driveway is “lumpy” and barely passable.

Volunteer groups are concentrating on those who have lost their homes, rather than those who are just seriously inconvenienced, Smith says. Many in the small fishing town are living in trailers or tents. The mosquitoes are ferocious, the debris piles enormous. People are getting sick, says Charlotte. “I go outside and just start coughing and sneezing.”

Coping with the daily frustrations and witnessing the difficulties of others has exacerbated her and her husband’s CMT, she says. “I have endured pain that I have never in my life endured. I always feel like I’m broken, it’s that painful. It’s the stress.”

MDA Makes Friends
ANNE SWISHER
MDA Health Care Services Coordinator
Houston
Sept. 6

A week after the storm, with hurricane refugees arriving at the Houston Astrodome, Swisher swung into action.

She quickly contacted local agencies offering MDA’s assistance, and e-mailed other MDA offices in the division about their loan closets. She got MDA’s number included on a resource list being given out by the Houston Center for Independent Living.

The requests quickly started coming in — for wheelchairs, accessible transportation, a hospital bed, a commode chair and Hoyer lifts, even a communication device for a man with amyotrophic lateral sclerosis (ALS). Camp volunteers and local families called the office offering transportation and housing.

“We’re just seeing the best of humanity,” Swisher reports. “I feel blessed to be able to help.”

One of her favorite stories is of being able to help an evacuee with severe multiple sclerosis. A local family who had taken in the man called the Multiple Sclerosis Society for help, and was advised to call MDA. Working with a compassionate vendor, Swisher was able to get donations of a hospital bed, Hoyer lift and shower chair delivered that night.

“The man who called us was so grateful,” she says. “He said we made a friend for life.”

Oct. 25, 2005

The Houston MDA office has become known as the place to go for help by those with disabilities. Swisher continues to field calls from people with and without neuromuscular diseases looking for assistive equipment and has been able to put people in touch with vendors who have been “just wonderful.”

“I thought this would all be over in three weeks, but it’s not,” she marveled.

The office even fielded a call from a woman from New Orleans whose brother had evacuated to Houston and then died. The woman was hoping MDA could help her get her brother back home for burial — one of the few needs the office has been unable to meet.

Although Hurricane Rita didn’t do much damage in Houston, it hit hard in the Beaumont area of southeast Texas. Swisher still hasn’t been able to contact all the families registered with MDA in that area.

Louisiana MDA Offices Regroup From Storm
MDA FIELD STAFF
Louisiana
Sept. 14

“Our main concern is locating our families,” says Linda Cunningham, MDA Regional Director overseeing Louisiana. It’s a slow, frustrating process, due to lack of phones and mail service. As far-flung individuals and families make contact with MDA offices in their new locations, the pieces slowly fall into place.

All MDA staff in the affected areas of Louisiana, Mississippi and Alabama are accounted for, although several have lost homes and vehicles. Brandi Gonzales, an administrative assistant in the New Orleans office, evacuated with her family in their RV, only to find that the storm had followed them up to Hattiesburg, Miss., where they had to ride it out in a Wal-Mart parking lot. Almost three weeks later, they’re still in the same parking lot, using electricity from a local business.

Melanie Stringer, New Orleans health care services coordinator, sat out the storm in a “very rustic” two-bedroom cabin at a fishing camp, with nine other family members and a dog. Stringer, who is 32 weeks pregnant, went into premature labor this week, and is hospitalized in Baton Rouge, where medical staff was able to stabilize her condition.

The MDA offices in Baton Rouge and Lafayette have been coping with the huge influx of evacuees into their towns, and trying to reschedule clinic visits for people who used to go to the two now-flooded New Orleans clinics. They haven’t been able to make contact with all doctors, but the Lafayette office has heard from its new director, neurologist Giancarlos Gierbolina, who had only conducted one clinic prior to the storm.

After providing emergency medical service during the immediate crisis, then flying off to resettle his wife and children in their native Puerto Rico to start school, Gierbolina returned to find that his position at Tulane University in New Orleans had been relocated to Houston. Nonetheless, he contacted Lafayette HCSC Mia Patout to let her know he would be at the next clinic as scheduled. “All of these families have been waiting long enough,” he said.

“I’m so proud of MDA and all our people,” Cunningham says. “The staff, as scattered as they are, have such strong faith, love and compassion for the people they serve.”

Oct. 26, 2005

“Six to eight weeks later, everybody is feeling it,” says Monique Simpson, Baton Rouge HCSC. “We’re all getting tired. You want normalcy, but this is what is normal for now.”

For the foreseeable future, the New Orleans MDA office will share space with the Baton Rouge office and the New Orleans MDA adult clinic will be held in Baton Rouge. But in one step back toward normal, the New Orleans MDA pediatric clinic has reopened its doors at Children’s Hospital.

New Orleans MDA HCSC Melanie Stringer is out of the hospital and mom to a beautiful baby boy, Sawyer. Brandi Gonzales, who was stranded in her RV in a Wal-Mart parking lot for weeks, also has been able to return to her New Orleans home, which was undamaged, although a tree had fallen on her car.

Hurricane Rita affected a number of families served by the MDA office in Lafayette. Nearly a month after the storm, some still are without power, mail or phone service, says HCSC Mia Patout. Finding a contractor is like finding the Loch Ness monster.

“The problem with Rita was, anybody who wanted to evacuate really didn’t have anywhere to go, because all the hotels were full of people who evacuated for Katrina,” says Patout. “Everything is filled.”

A Florida Thanks to IAFF
SHELLEY OBRAND
Davie, Florida
Unidentified form of muscular dystrophy
Aug. 28

Hurricane Katrina cut across Florida on its way to the Gulf Coast, knocking out Obrand’s power for 50 hours. Obrand, who is completely vent-dependent, was sustained by local fire fighters, who made numerous trips to her home to pick up and deliver batteries that kept her ventilator running.

Obrand has served 13 years on MDA’s National Task Force for Public Awareness, and teaches at Nova Southeastern University in Ft. Lauderdale.

“Fire fighters and families such as mine have a special affinity toward each other,” she says, referring to the national Fill-the-Boot campaigns run by the International Association of Fire Fighters (IAFF) to benefit MDA. “I called upon that special relationship when I contacted my local fire department in Davie.”

Click here to read more about Obrand’s experience.

Oct. 26, 2005

And the hurricanes just keep coming. At least with the coming of fall, the weather is a little cooler so it’s not so bad waiting for the power to be restored after Wilma roared through, says Obrand. This time the power outage affected more than a million and a half people in Dade and Broward counties, and predictions are for a wait of up to four weeks for full restoration.

“The lines for gas, ice and water are unbelievable,” says Obrand. “There are so many trees down and no lights left anywhere. But we were lucky this wasn’t a real wet storm, so there wasn’t much flooding.” Her home lost roof tiles, screening and trees -- “but not $5,000 worth, which is our insurance deductible.”

After Katrina, Obrand and her mother had been planning to buy a generator but still were comparison-shopping when Wilma hit. Several neighbors offered use of their generators to recharge the wheelchair batteries that keep her ventilator running, so she’s in good shape.

Asked if she’s become a hurricane veteran, she laughs and says, “I don’t know if it’s ‘veteran’ or ‘victim.’ South Florida is beautiful and I love living here. It’ll be great in another month but right now -- it’s not so encouraging. There’s been too many too quick.”

She confesses she’s a little annoyed by helpful advice to “just check into a hospital” when the storms come through. Because she needs a constant attendant, and because the hospitals don’t allow anyone to stay with her, “it just doesn’t work that way.”

For more about the effects of Hurricane Katrina on people served by MDA, watch for the November-December issue of Quest, and the October MDA/ALS Newsmagazine.

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