A new way to connect with others living with SCI
By Thea Flaum, President, Hill Foundation
A spinal cord injury happens in an instant, but it changes families' lives forever. Suddenly dealing with their new reality is a confusing, often isolating experience.
 FacingDisability.com is a new resource that was designed to address that situation. It was specifically created to connect people and their families, who are coping with new injuries, with others who have been there before them. It contains over 1,000 videos drawn from interviews of people with SCI, their families, caregivers and experts.
People with spinal cord injuries, their parents, spouses, siblings, children and friends were asked the same 48 questions, and only the best answers are posted on the site. Questions include: "What was your greatest fear at first?" "Where did you get the best financial help and information?" "How has the injury affected your family relationships?" and "How do you see your future?" Click to see the complete FacingDisability Question List.
It can be especially helpful to hear from others like you, so it's also possible to filter videos by parents, spouses, siblings, etc in the FacingDisability "People" section. You can narrow your search by level of injury (quadriplegic or paraplegic), gender of person injured, and age at injury.
In the FacingDisability "Experts" section, you can see and hear answers from top spinal cord injury professionals, on subjects everyone asks first. Topics include: "Spinal Cord Injury 101" "Preventing Pressure Sores," "Sex and Fertility after SCI" and "Pediatric Rehabilitation."
Another unique feature is the FacingDisability Peer Counseling program. People are able to anonymously connect one-to-one through an on-site private message system. The Forums are another way for people to find information on or share their experiences with spinal cord injuries.
Visit the FacingDisability Forums to join a discussion group or start a new thread. There is also an extensive and easy-to-use Resource section, categorized into 13 different topics. All 300 resources have short descriptions and tips on "Where to Start."
FacingDisability.com was founded by the non-profit Hill Foundation of Chicago. It was created in the belief that connecting individuals suddenly dealing with spinal cord injuries with others who have been there before them helps people find the strength and support to face their new lives ahead.
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 CaringBridge(R) is a nonprofit organization offering free personalized websites that allow people to stay in touch with family and friends during a health crisis, treatment and recovery. The goal of the service is to ease the burden of keeping friends and family updated, while also providing a way for them to send their love, support and encouragement.
The Well Spouse™ Association is a partner with CaringBridge. As part of the partnership,
Well Spouse has a CaringBridge Partner Entry Page here
- Spousal Caregivers may use this page to build their own CaringBridge personal page to notify friends and family about their ill partner's and their own situation. Those with whom the page is shared can also click on the Well Spouse™ Association logo there, and go to the website, to learn more about the WSA.
And from time to time the partners will exchange articles and post them on their websites:
Featured by the Well Spouse™ Association:
Making a Real Impact: The CaringBridge Phenomenon
- published in the WSA Member Minute August 26, 2011
Let a CaringBridge Website Help You Communicate with Friends and Family
- published in the WSA Member Minute May 21, 2010
Featured by CaringBridge:
Coming up: Caregiving Expert Shares His Top Three Caregiving Tips
Interview with Lawrence Bocchiere III, to appear in the October, 2011 first issue of CaringBridge's new electronic newsletter.
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Patient Resource Publishing |
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Cancer Resources for Patients and their Families;
Patient Resource Publishing offers free patient education materials that can be ordered here.
Titles include:
- Patient Resource Cancer Guide
- Patient Resource Cancer Guide: Acute Promyelocytic Leukemia
- Patient Resource Cancer Guide: Advanced Prostate Cancer
- Patient Resource Breast Cancer Guide (2 titles)
- Patient Resource Cancer Guide: Leukemia, Lymphoma, and Multiple Myeloma
- Patient Resource Cancer Guide: Treatment-Related Side Effects
The materials can be obtained online at PatientResource.net here
In providing these materials free, Patient Resource Publishing will also be putting information on their website about the Well Spouse™ Association, so that patients looking on their website will be able to pass the information about WSA onto their spousal caregivers.
In addition, the associated Patient Advocate Foundation helps patients by "Solving Insurance and Healthcare Access Problems" here
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Vitas Hospice Care
 A serious, advancing life-limiting illness can be a difficult condition to confront--let alone to talk about with your loved ones and friends. Yet, for many of us, the day will come when we need to confront limitations resulting from serious illness and consider how we would like to be treated if our condition became terminal. How might we like our life's final chapters to unfold?
For over 30 years, VITAS has advocated for the rights of terminally ill patients and their families. We believe that patients should be apprised of their clinical prognosis and be involved in the decision-making process that determines how their end-of-life care is provided.
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