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Spinal Cord Injury Paralysis Resource Center

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Reeve Foundation Peer and Family Support Program

Talk with a Peer Mentor

Chat with a Peer Mentor

Whether you are newly paralyzed or have been living with paralysis for a period of time, we all share common challenges, but often our experiences can be very different.

While some of us have had occasional issues with our bladder and bowels, others have ongoing and continuing problems. While some of us easily re-integrated back into school or work, others have had significant difficulties. Some may have found it hard to initiate relationships, while others didn't seem to have much problem at all. Some have traveled extensively, while others are intimidated by the idea of traveling.

The same holds true for family members and caregivers. We recognize the incredibly vital role the caregivers play in the lives of our community members. Let's be honest, without them some of us couldn't get out of bed in the morning. While their experiences are different the emotional, mental, and physical demands of caring for someone that is paralyzed is challenging and overwhelming in its own way.

These are just some of the myriad of situations our peer mentors have faced, dealt with, overcame and now they are thriving in their lives. Let the people that live with paralysis and those that care for them share what they have learned so the road for you will be less rough and less intimidating.

How can a peer mentoring benefit you?
There will be many benefits for you through the Peer & Family Support Program (PFSP). We believe some of the most important things you will gain from spending time with a peer mentor are:
- Clearer understanding of maintaining health and wellness
- Help you avoid secondary conditions of living with paralysis
- Provides critical emotional support
- Better understanding of local and national resources
- An honest, realistic and optimistic discussion about your future
- An understanding of spinal cord injury research and the research process
- Provides caregiving tips and techniques
- Provides caregiver self-awareness and resilience
- Helps you to recognize what you don't know about life with paralysis
- Gives you peace of mind that you are part of a nationwide community
- Confidence builder
- Motivation
- Improved social interaction and recreation
- Provides tips and tricks to conquering the challenges of life with paralysis
- Creates a positive effect of being around positive role models

What is a Reeve Foundation Certified Peer Mentor?
They are people very similar to you. They are people thriving in their own lives, despite their own individual challenges as someone living with paralysis or someone caregiving for someone living with paralysis. They will not have all the answers to all of your questions, but rest assured they will listen and provide a perspective that only someone who has lived through all the different challenges of paralysis can.

A peer mentor:
- Has been paralyzed or caregiving for someone with paralysis for at least one year
- Has a positive outlook
- Is thriving in their own life
- Has a desire to give back to their community
- Has the time to give to the program
- Maintains privacy and confidentiality
- Has knowledge of the local rehab environment and resources
- Has good conversation and listening skills
- Has access to an unparalleled amount of information and resources at the local, state, and national levels
- Has completed a specialized certification program, passed a federal background check and signed a code of conduct agreement

Get more information on the peer mentor training and certification process.

Chat with a Peer Mentor

How do we match a peer mentor with a peer?
After successfully completing the training and certification program, peer mentor candidates are officially certified as Reeve peer mentors. Mentors are added to a list of available mentors in their respective region and then matched with a peer when appropriate. The mentor and peer match is extremely important. Every effort is made to match a peer with a peer mentor that is of the similar:
- Level of injury or type of paralysis
- Gender
- Approximate age
- Cause of paralysis or paralyzing condition stroke, MS, ALS, Spinal Bifida etc.
- Urban/rural dweller
- Ethnicity/Culture
- Civilian/Veteran
- Has similar hobbies or interests
- Region and locale

Remote mentoring
In areas where we do not have a certified peer mentor that matches you well, we utilize remote mentoring. We identify another peer mentor within our national network that will work together with you via phone, email, Skype, etc. We always try to match you to a local peer mentor first, but will widen our search within our network to find the best match for you.

How does the peer/mentor relationship work?
Well, that is up to you, the peer. The peer/mentor relationship is your private confidential relationship. You determine the location, frequency, and length of meetings/calls. Topics of discussion are based on what is important to you and your level of comfort. Don't worry about getting the wrong peer mentor... you can always request a different peer mentor with ease. We encourage you to contact us soon and schedule time with one of our peer mentors. They truly understand what you are going through, better than anyone else, and chances are they once had the very same questions as you.

What you should expect from your peer mentor?
- Reaches out to you initially within specified timeframes
- Keeps all appointments and be on time (allowing for extenuating circumstances)
- Listens without judging
- Maintains privacy and confidentiality
- Allow you to set the meeting's discussion points
- Will not tell you what to do or how to act

How to request your Peer Mentor
Applying for a mentor is simple, private and secure. You can request a mentor a number of ways:

- Request a peer mentor here. This link takes you to the Paralysis Resource Center's Information Specialist page and an electronic form. Be sure to indicate that you are requesting a peer mentor on the "Tell Us About Yourself" page of the form. After we have received this information, the PFSP Regional Coordinator for your area will be in touch with you.
- Contact the Paralysis Resource Center by calling 800-539-7309

Peer mentor visit:
- If you are in the hospital and would like a visit while in the hospital we will try to have a peer mentor there within 2-3 days
- If you are out of the hospital you will be contacted within 5 days to set-up an visit You may be contacted by a PFSP staff member to further discuss your situation and needs, and to collect additional information to help us identify the best match for you.

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 Caregivers PCAs Respite (PDF)

A Reeve Foundation Fact Sheet on Veterans Benefits (PDF)

Military & Veterans Programs (MVP)

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 Mindfullness (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.

Angel Flight for VeteransVeterans Angel Flight (VAF) facilitates no-cost or reduced-rate patient travel services for needy veterans and their families.

CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.

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.

The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.

Defense and Veterans Brain Injury Center (DVBIC)The mission of the Defense and Veterans Brain Injury Center (DVBIC) is to serve active duty military, their dependents and veterans with traumatic brain injury (TBI) through state-of-the-art medical care, innovative clinical research initiatives and educational programs.

Department of Veterans Affairs -- Benefits AdministrationCommitted to helping veterans get the services they have earned such as patient care and veteran's benefits.

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

Disabled American VeteransAn organization of disabled veterans focused on building better lives for disabled veterans and their families.

Defense Centers of Excellence for Psychological Health and Traumatic Brain InjuryDCoE assesses, validates, oversees and facilitates prevention, resilience, identification, treatment, outreach, rehabilitation, and reintegration programs for psychological health and traumatic brain injury to ensure the Department of Defense meets the needs of the nation's military communities, warriors and families.

Fisher HouseThe Fisher House™ program is a unique private-public partnership that supports America's military in their time of need. The program recognizes the special sacrifices of our men and women in uniform and the hardships of military service by meeting a humanitarian need beyond that normally provided by the Departments of Defense and Veterans Affairs.

Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.

Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.

Homes For Our TroopsTheir mission is to build specially adapted homes for severely disabled soldiers and their families.

Federal Recovery Coordinator ProgramThe program is designed to cut across bureaucratic lines and reach into the private sector as necessary to identify services needed for seriously wounded and ill service members, veterans and their families.

Homes for Wounded HeroesThis program assist veterans in adapting their homes for a disability that occurred serving in Iraq or Afghanistan at little or no cost for the veteran.

Fallen Patriot FundWas established to help families of U.S. military personnel who were killed or seriously injured during Operation Iraqi Freedom.

Injured Marine Semper Fi FundProvides financial assistance and quality of life solutions to marines and sailors injured in combat, training, or with life threatening illness. Can help with associate expenses including purchasing of special equipment, adaptive vans or vehicles, and handicap home purchases and modification.

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.

Military One SourceMilitary OneSource is provided by the Department of Defense at no cost to active duty, Guard and Reserve (regardless of activation status) and their families. Military OneSource is there for military personnel and their families by phone or online.

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.

National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

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.

National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.

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.

OEF/OIF ServicesOperation Enduring Freedom (OEF) Operation Iraqi Freedom (OIF)

Operation Helping HealProvides financial assistance to wounded service men and women returning from our current overseas military operations.

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.

Rebuilding Together's Heroes at HomeHeroes at Homesm was launched by Rebuilding Together and Sears Holdings in May 2007. Heroes at Home strives to improve the lives of all low-income U.S. service members, veterans, and military families in need across America by making necessary repairs, improvements, and modifications to their homes.

Rebuilding Together's Veterans Housing InitiativeCreated to meet the growing needs of veterans from past and present wars. The initiative serves to fill the gaps in housing modifications and repair services that retired and active service men and women struggle to meet. Working in partnership with corporate sponsors, Rebuilding Together's Veterans Housing Initiative strives to provide safe and accessible housing for all low-income veterans.

Red Cross Family Caregiving ResourcesInformation for caregivers.

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 CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.

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

Soldiers AngelsProvides financial assistance to OEF OIF service members and veterans for financial assistance to pay mortgages and utilities.

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).

VA Center LocatorGuide to the over 1300 VA centers in the US broken down by region.

Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.

The Wounded Warrior ProjectSeeks to assist those men and women of our armed forces who have been severely injured during the conflicts in Iraq, Afghanistan, and elsewhere around the world.

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!
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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.

The information provided in the Paralysis Resource Center was supported by Cooperative Agreement number 1U59DD000838-01 from the Centers for Disease Control and Prevention (CDC). Its contents are solely the responsibility of the Reeve Foundation and do not necessarily represent the official views of the CDC.