"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."
"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."
"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."
"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."
"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."
"It's nice to have him (mentor) when I need help."
"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."
"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."
"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."
"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."
"The Reeve mentoring program is one of the best mentoring programs because they not only work with the patient, but also with the family."
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 (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.
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).
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.