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Spinal Cord Injury Paralysis Resource Center

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Staying Above the Rising Waters

How Your Own Personal Emergency Preparation Can Save Your Life

By Nate Herpich

Liz Treston and her service dog Finn

When Hurricane Sandy leveled Liz Treston's city of Long Beach, New York, and many of its residents were there to witness the carnage. The year before, a large percentage evacuated prior to Hurricane Irene, but damage to their homes proved minimal. So this time around, she says, most people stayed put.

By the time the ocean came flying down the street and into the finished basement of Treston's home, it was too late for her to leave. "I'm lucky, I live in a house that is higher up than my neighbors," she says, "so the first floor of my home remained untouched. I don't know what I would have done had I been on lower ground." While she waited out the rising water, she heard her appliances crash and fall downstairs, and she smelled sewage invading her home. Electricity was lost. Her brand new adapted van, and her manual chair that was in it, were both swept out to sea. Luckily, she ended up safe, as the waters receded before reaching the top floor of her house.

Treston, who lives with spinal cord injury, says that she spends every day with the trauma of this natural disaster and how it deeply affected her home and community: She can still visualize the whitecaps that crashed against both her house and her neighbors' homes that day. The process of rebuilding will take awhile, she says. But while she is thankful that she wasn't badly hurt during the flood, the rising waters helped her to realize that she wasn't properly prepared for that day. Things were very close to being even worse and she knows, that in the future, she needs to be better prepared for emergencies that may come her way.

"Anyone that thinks they're just going to be okay during an emergency, but who has not properly prepared, is kidding themselves," she says. "We're all very smart people in my family, but we weren't close to being ready. In many ways, I'm lucky that I'm still here to tell this story."

Don't Assume Everything Will Be Okay
Treston says that, when the waters were at their highest, she wrote a goodbye note and her social security number on her arm for any rescuers that might have found her. It got that bad. All of her files are now gone, and they included critical information such as how, and where, to order her catheters and prescription drugs. When she was finally able to evacuate, she went to her mother's home in nearby Westchester County, but was unable to find appropriate accommodations to address all of her needs. She developed pressure wounds while stuck in bed at her mom's.

Unfortunately, Treston's experience is not uncommon, says Paul Timmons, Co-Founder and Chairman of the Board at Portlight Strategies, an organization designed to assist the disabled, and run by people living with disabilities, and which specializes in offering aid to those affected by natural disasters in particular.

"People living with disabilities should remember that they have very specific needs, and they should know what they'll need should they be forced to evacuate their homes," says Timmons. "No one should ever expect that even disaster shelters will be equipped with everything they might need to weather a storm."

Have a Plan in Place
The good news is, everyone can prepare for a natural disaster, and should do so, and do so now. Disasters, including something as simple as a power outage that could have real personal ramifications, aren't always forecasted. So get to it! Put together a plan, and practice it, says Timmons, because the chances are, when the emergency happens, things are going to be chaotic. Knowing exactly what needs to be done will go a long way toward ensuring that an evacuation can go as smoothly as possible, given the circumstances.

Here's some key advice:

- Prepare a "go bag" with everything in it that you'll need for an extended period of time. Treston suggests pretending that you are going on vacation for two weeks, and pack accordingly. Think about things like consumable supplies and sterile equipment that you may need. If you can't bring your chair on the day in question, you may need to be able to bring your chair's cushion. Where will you sleep, if not at home, and can you bring something like an egg crate to provide support and comfort? Do you have enough cash? Power outages could mean no ATM access.

Think about those things that you need personally, and put them in that bag. A good idea is take notes for a period of several days, writing down what it is you use on a daily basis, so you'll know exactly what you should bring.

- Put all of your important documents on a thumb drive, so that you'll know where and how to get critical, life-saving supplies, medication, and the like, or be able to access important insurance information, phone numbers, email addresses and the like. Keep an updated version in your "go bag."

- If your day-to-day depends on electricity, think about how you will access it should the lights go out. Do you have a generator in place?

- Know your exits, and if and how you're able to access them.

- Ask yourself if you have a procedure in effect for communicating with first responders, should you be unable to evacuate. If stuck at home, have you stockpiled enough non-perishable food items and water?

'Nothing About Us, without Us'
Above all, people living with disabilities must accept personal responsibility in how they approach emergency preparedness. But they also have an important role to play in their communities, says Marcie Roth, Senior Advisor on Disability Issues for the Federal Emergency Management Agency.

"Since we need to think fast to manage our own particular needs," she says, "we can be better suited to helping our community prepare for emergencies that might arise. It's important that all local communities engage people with disabilities as experts in emergency preparedness. 'Nothing about us, without us.'"

Think about what it is you bring to the table, and share your knowledge -- it will be beneficial for you, and for those around you as well. It's critical to create an environment of mutual support, says Roth. Perhaps a person with a disability has a generator at home for daily needs; this might be an option for able-bodied people needing cell phones during an emergency when power has gone out. Think about how an able-bodied neighbor near you could similarly be helpful in a time of need.

By and large, local organizations are those who can effect change when it comes to disability services, and are the best way to connect people in the aftermath of a natural disaster, says Roth. The Federal government simply doesn't have the same kind of local connections. Contact your local emergency management office to find out more about how you can get involved in your community's emergency preparedness planning.

And research your local facilities, and find out what is currently in place. "Are your local shelters accessible in a way that meets your needs?" says Timmons. "Don't take someone's word for it, make sure they are, yourself." And if they're not, you may very well be the one to have to advocate for change.

Becoming Whole Again
For Treston, living through Sandy was like putting the moment her doctor told her she would never walk again on a "loop tape" -- she lives, and relives the disaster each and every day as she seeks to rebuild her life in Long Beach. But, she says, she is also well on her way back, and looks forward optimistically.

"Few of us ever expect to have to live through a natural disaster," she says. "I wish I was better prepared last October. But I can tell you what I've learned through this: The more information you have and bring with you, the sooner you can move back to a habitable state..."

"And the sooner you will become whole again."

To best prepare for an emergency, check out these critical resources into emergency preparedness (PDF).

You can also contact a Paralysis Resource Center Information Specialist to order a "Tips for First Responders" booklet.

Access-Able Travel SourceHi, we are Bill and Carol Randall and we live in Colorado. We have always liked to travel and like many of you don't get to do it enough. Carol has MS and uses a wheelchair or scooter. This has given us some first hand experience with unpleasant surprises and access problems. That's why we started Access-Able Travel Source. We are an information service! We are not travel agents, just travelers. We think we have come up with a way to help fellow travelers.

Access to RecreationOffers some interesting products that may come in handy during your travels.

A Reeve Foundation Fact Sheet on Pediatric SCI (PDF)

A Reeve Foundation Fact Sheet on Emergency Preparedness for People with Disabilities (PDF)

A Reeve Foundation Fact Sheet on Adjustment to SCI (PDF)

A Reeve Foundation Fact Sheet on Aging with SCI (PDF)

A Reeve Foundation Fact Sheet on Medical Air Transportation (PDF)

A Reeve Foundation Fact Sheet on Medical Air Transportation (PDF)(Spanish)

A Reeve Foundation Fact Sheet on Travel (PDF)

A Reeve Foundation Fact Sheet on SCI Autobiogs or Biogs (PDF)

A Reeve Foundation Fact Sheet on SCI Chat Rooms (PDF)

A Reeve Foundation Fact Sheet on SCI Research (PDF)

A Reeve Foundation Fact Sheet on SCI Tutorial 101 (PDF)

A Reeve Foundation Fact Sheet on SCI Videos (PDF)

A Reeve Foundation Fact Sheet on Brain and Spinal Cord Tumors (PDF)

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF) - English

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF) - Spanish

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (PDF)

Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.

Avis Rent A CarLaunched Avis Access which provides hand controls, swivel seats, transfer boards, and spinner knobs to those with disabilities.

AmtrakAmtrak enjoys a good reputation among travelers with disabilities, offers information on reservations, accessible coaches and sleeping accommodations, boarding, use of oxygen, etc.

American Red Cross Summer Safety TipsSo many simple measures can be taken to significantly reduce the chance of getting heat exhaustion and heat stroke. The Red Cross encourages drinking plenty of water and taking frequent breaks while working outside. Staying inside and avoiding strenuous activity is also recommended.

Bicycle Helmet Safety InstituteThey are a small, active, non-profit consumer-funded program providing bicycle helmet information. They try to explain the technology of helmets to consumers, and promote better helmets through improved standards.

CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.

Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.

Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.

Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.

Emerging HorizonsLots of information in this accessible travel magazine covering news, resources and travel tips.

Environmental Traveling CompanionsOffers outdoor adventures.

Determined 2 HealProvides helpful information for the newly spinal cord injured.

Flying with DisabilitySite was designed to make flying with a disability as easy as possible.

HertzCan add hand controls to many of its rental cars.

Federal Aviation Administration (FAA)Information on laws regarding air travel for persons with disabilities.

Federal Emergency Management AgencyWebsite on assisting people with disabilities in a disaster.

Greyhound BusLets your Personal Care Attendant (PCA) accompany you for a 50% discounted ticket as long as the PCA travels with you the entire way. 1-800-752-4841

Injury Prevention WebHosts the web sites of several agencies and organizations working to prevent injuries. Contains a weekly update of articles, agency reports and injury data for every state.

Foundation for Aquatic Injury PreventionDiving Safety

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.

Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.

The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.

Mobility International USAThe National Clearinghouse on Disability and Exchange has programs to increase the participation of people with disabilities in international exchange programs.

Labor Department's Office of Disability Employment PolicyEmergency Preparedness and People with Disabilities.

LufthansaTraveling without Barriers.

The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.

National Center on Emergency Preparedness for People with DisabilitiesFocuses on ensuring that individuals with disabilities are included in the development plans for protection from all types of emergencies

National Organization on Disability's Emergency Preparedness InitiativeDisability is included in all levels of emergency preparedness.

National Council on DisabilityCouncil's report: Saving Lives: Including People with Disabilities in Emergency Planning.

National Center for Injury Prevention and ControlSponsored by the CDC, the center has a spinal cord injury prevention web page.

National Highway Traffic Safety AdministrationSave lives, prevent injuries and reduce economic costs due to road traffic crashes, through education, research, safety standards and enforcement activity.

National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.

New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.

Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.

Nobody Left BehindDisaster Preparedness for Persons with Mobility Impairments. Prepared by University of Kansas / Research and Training Center on Independent Living. Includes a consumer survey on people’s experiences in disasters.

Paralyzed Veterans of America, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.

PatientTravel.orgProvides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network. The Center provides a variety of services to those seeking a way to travel long-distances for specialized medical evaluation, diagnosis and treatment.

Project Safe EV-ACInternational Center for Disability Information.

Personal Watercraft Industry AssociationPWIA was created to bring together companies that manufacture personal watercraft (PWC) in order to promote safe and responsible operation of personal watercraft.

SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.

Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.

The Society for Accessible Travel & Hospitality (SATH)A clearinghouse for accessible tourism information, dedicated to a barrier-free environment throughout the travel and tourism industry.

ScootAround IncOffers scooter and wheelchair rentals in dozens of North America destinations

Special Needs GroupGlobal provider of special needs equipment rentals including mobility scooters, wheelchairs, powerchairs, oxygen, patient lifts, hospital beds and more. Equipment is delivered to cruises, hotels, convention centers and other requested locations.

ThinkFirst for KidsA program of the National Injury prevention Foundation to prevent spinal cord injury among children.

ThinkFirst for TeensA program of the National Injury prevention Foundation to prevent spinal cord injury in the teen population.

ThinkFirst FoundationProvides educational tools to teach young people about injury prevention especially spinal cord and brain injury.

Transportation Security AdministrationScreening of persons with disabilities program for air transportation.

United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.

US Department of TransportationWorking towards equal access and accessibility using info-technology.

United AirlinesSpecial Needs Link.

U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship areencouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.