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Spinal Cord Injury Paralysis Resource Center

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Reeve Foundation Peer and Family Support Program

Testimonials

"Having a peer mentor has meant a lot to me as I have felt alone in a community of people without disabilities, even in my own house. No one understands what I am going through better than a peer mentor. I am working with Tom and he is helping me advocate for myself, providing accessible housing resources so that I can move out of my mom's house and helping me with a job search. He told me how much confidence he gained from going back to work after his injury. He also told me about the Center for Independent Living's sports and recreation program and I started hand-cycling this summer, something I may have never known about. I have met a lot of others with disabilities through this resource. I am excited about my future. I would like to take a peer mentor training so I can share my struggles as well as my successes."
- Peer living with paralysis

"Thank you so much for your advice and kind words. We have no way of really helping Eric (SCI) and Beth... not the way you all can. I know you will provide Eric and Beth with great contacts to help them through this. You already gave us greater peace of mind. Thank you so much."
- Family member of a peer living with paralysis

"Sue is a life line for me while I adjust to life in a wheelchair. We have never met in person, but that hasn't stopped us from sharing our lives. She is playing a huge role in my ability to establish a satisfying life."
- Peer living with paralysis

"I was at my wits-end since my husband died. He had been our son's primary caregiver and I don't do it as well. My son is angry at my husband for dying, and is angry at me, too. I don't even feel like his mother anymore... just a caregiver. We are losing our relationship! Your words of support and encouragement were so reassuring, and suggestion to have a caregiver mentor for me was like a ray of sunshine. Thank you. I feel like I can face another day, and the day after that."
- Family member of a peer living with paralysis

"Shortly after I was paralyzed in a dirt bike accident in 2000 I realized that not a lot of people were available to give me and my family support. I soon had to learn how to live with a disability and figuring out things on my own was very tough. The support I received was not very helpful in the beginning especially when people told me to 'just accept it and move on.' I was 19 years old and had a positive attitude about getting better and walking again. The truth is that they were right but I didn't want to hear it at the time. There is a time, a place and a method to work through the 'you'll never walk again' conversation. I learned through my peer mentor training from the Christopher and Dana Reeve Foundation that listening is one of the best tools to be an effective peer mentor. I can be an ear now and listen to those who are going through similarly tough times as I did. Then I share my experience and know from the peer's reaction that I'm making a difference. Now, I have had a chance to meet several people with new injuries and it has been a win, win. They have loved learning about the sports I compete in and I have learned from them as well. My life with a spinal cord injury has been a journey and now having people to help along the way is very meaningful."
- Bryan Wilkinson, living with paralysis, Reeve certified peer mentor

"It's nice to have him (mentor) when I need help."
- Peer living with paralysis

"Keep up all your great work Todd. People like yourself make such a difference in this world. We just need more like you in it."
- Peer living with paralysis

"A peer was at his wits-end handling his bladder management, and could no longer handle urinary leaks. He had returned home from the hospital basically unprepared deal with his choices in catheters. We worked together to explore different options and products to find the right bladder management method. He has since discovered what works for him, resulting in no more awkward and humiliating urinary accidents."
- Steve Kenny, living with paralysis, Reeve certified peer mentor

"A peer, a commercial diver who was paralyzed from the "bends", was having difficulty figuring out the right process and products to restart his sex life with his longtime partner. I shared some of my experiences, offered some suggestions to share with his urologists, and he finally succeeded where he had previously had trouble. I have found nothing as rewarding as the smile on his face the next day, and his fun remark to me checking the look on his partners face when she arrived later."
- Steve Kenny, living with paralysis, Reeve certified peer mentor

"Thanks to the Reeve Foundation Peer & Family Support Program. I feel that me and my family will not stand alone in this new journey of rebuilding my life as well as that of my family."
- Peer living with paralysis

"The Reeve mentoring program is one of the best mentoring programs because they not only work with the patient, but also with the family."
- Peer living with paralysis

"I mentored Wade a few times during his stay before he went to Craig Hospital for the remainder of his rehab. When I met Wade he was in a neck and back brace, getting around in a power chair, and wondering what life was going to be like. My first visit with him I took him outside with his parents and therapist and showed him my truck. We also talked about power vs. manual chairs. I told him when he was strong enough he should look at getting into a manual as a low T injury. Next time I saw him he was wheeling on his own in a manual chair. It is now over a year later and Wade is employed, just got his very own apartment, and we see each other at the accessible gym. He has come a long ways in a very short time." - Reeve certified peer mentor

 

A Reeve Foundation Fact Sheet on Religion and 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 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 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.

American Association of SCI Psychologists and Social WorkersPromote research to improve quality of care and works to improve skills and techniques of members.

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.

Caregiver.comOffers a directory of support groups for caregivers.

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

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.

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.

NJ Self-Help Group ClearinghouseEnables people to help themselves with self-help groups.

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.

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.

University of Alabama at BirminghamOffers an information sheet (Info Sheet #11) on bladder care and management.

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.

ASK OUR EXPERTS
  • Email our Paralysis Information Specialists
  • Call our Paralysis Information Specialists
  • Call our Paralysis Information Specialists
  • Newly paralyzed or spinal cord injured? Start here.
Get your free copy of the Paralysis Resource Guide
Paralysis Resource Guide

This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!
¡Lea la versión electrónica en español ya mismo

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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.