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Spinal Cord Injury Paralysis Resource Center

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No More Patiently Waiting

Saralee and her dog Becky

Saralee and her dog, Becky

By Saralee Perel

In my neurologist's waiting room, we're all sitting there with various forms of paralysis. But none of us say anything to each other. Sheesh!

In most veterinary practices, there are TVs in the waiting rooms. But just like in an elevator where nobody acknowledges the other, everyone stares at that TV.

There aren't many places where we're more connected to each other than in waiting rooms. Yet when I'm in one, I keep to myself, hiding behind a magazine while pretending I can't hear the voices of people sitting right next to me. But the thing is -- basically we're in these rooms for the same reasons.

Our dog, Becky, is terrified at the vet's. When I cuddled her the last time we were there, I could feel her shaking. I saw other dogs crying and trembling while their owners were trying to comfort them. But did I offer a treat from my pocket or even pet them? Nope.

On one visit to my neurologist, when I was wearing my awful rock-solid Darth Vader style neck brace, I actually turned away from anybody who was wearing the same brace, intentionally avoiding eye contact. Double sheesh! It's not like we don't notice these huge dreadful appliances around our necks. Yet we handle this strong group connection by isolating ourselves from one another.

And so, at my last visit, I brought a book to use as a barricade. Within a few feet of me, a young boy who couldn't walk was crying. "I'm scared," he said to his father. So what did I do? I kept reading.

And then I had that moment. That once in a lifetime moment. I made a change. One from which I will never return. I put my book down and whispered to them, "I'm the same way at doctors' appointments. A friend taught me to massage the skin between my left thumb and forefinger whenever I'm anxious." I showed them what I meant. Then I watched as the father cradled his son's hand and helped him to relax.

"It's working," the boy's dad said to me, as his son slowly stopped his rapid breathing and began yawning.

The next time I'm in a waiting room, I will not miss the opportunity to connect with another who's scared. Many are just as frightened as I am, just as lonely, just as needful for a human, or dog, connection. From now on, I'm going to try to break through the isolation, and hopefully make it a tiny bit better -- for patients, their families, their caregivers, their friends, for me ... and especially for Becky.

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 Service Animals (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)

A Reeve Foundation Fact Sheet on Umbilical Cord Blood Banking (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.

Assistance Dogs InternationalA coalition of not for profit organizations that train and place assistance dogs.

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.

Canine Companions for IndependenceA national network of highly-trained assistance dogs and ongoing support.

Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.

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

Helping HandsProvide highly trained monkeys to assist people with severe spinal cord injuries or mobility-impairments.

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.

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.

Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.

Loving Paws Assistance DogsSpecializes in placing assistance dogs with children who are spinal cord injured as well as children with Muscular Dystrophy, Cerebral Palsy, and Spina Bifida.

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 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.

Owner Trained Assistance DogsAn email discussion list for those who train their own assistance dogs.

Paralyzed Veterans of America (PVA): Spinal Cord InjuryFor more detailed information on the clinical practice guidelines on respiratory management with spinal cord injury you can request booklets from the Paralyzed Veterans of America. These booklets also provide guidelines on proper weaning from a ventilator.

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.

Top DogOffers assistance in training your own dog to be a service dog. They sell a book and video on the topic also.

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.

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 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.