Adjusting To SCI/D
- 1. Adjusting to life after spinal cord injury or disease onset
- 1.1. Coping with Spinal Cord Injury
- 1.2. Hope Talk-Adjusting And Living With SCI
- 1.3. Adjustment to SCI-Three Perspectives-Presentation to PT students
- 1.4. Adjustment factsheets, articles and streaming video (in Video Resource Rm)
- 1.5. Conversations about Adjustment and Living with Spinal Cord Injury
- 1.6. SCI Video Blog
- 1.7. How to cope emotionally with a Disability
- 1.8. Adjusting to a Disability is a Journey
- 1.9. Taking Charge after SCI
- 2. Communication, Dating and Relationships after Spinal Cord Injury
- 3. Books and resources
1. Adjusting to life after spinal cord injury or disease onset
1.1. Coping with Spinal Cord Injury
Adjusting to spinal cord injury (SCI) can be a long and challenging process. You may feel alone and experience a variety of emotions, but you can and will adapt to this new set of challenges and rediscover your passion for life.
1.2. Hope Talk-Adjusting And Living With SCI
United Spinal Association’s Jose Hernandez, NYC Advocacy Coordinator and Bill Fertig, Director, Spinal Cord Injury Resource Center this Thursday, September 23rd, 3pm-4pm Eastern on their ‘Day-In-The-Life’ Hope Talk in conjunction with Help Hope Live fundraising guidance organization. Jose & Bill have lived successfully with SCI for a combined 48 years and will share their hopeful perspective in many of life’s most important areas featuring both high and low tech adaptations for driving, working and so much more! Please register HERE: https://helphopelive.org/event/hope-talk-a-day-in-the-life-with-a-spinal-cord-injury/
1.3. Adjustment to SCI-Three Perspectives-Presentation to PT students
Adjusting to spinal cord injury-Three Perspectives
Bill Fertig, Director, Spinal Cord Injury Resource Center Paraplegic
Daniela Castagnino, Information Specialist Quadriplegic
Michele Lee, Program Director Quadriplegic
1.4. Adjustment factsheets, articles and streaming video (in Video Resource Rm)
Adjusting to Life after Spinal Cord Injury was developed by Phil Klebine, M.A., Charles Bombardier, Ph.D., and Elizabeth Richardson, Ph.D.in collaboration with the SCI Model Systems Knowledge Translation Center.
1.5. Conversations about Adjustment and Living with Spinal Cord Injury
Getting to Normal: Conversations about Adjustment after Spinal Cord Injury
Presented on November 10, 2015 by Northwest Regional Spinal Cord Injury Center. Three individuals with spinal cord injuries share their personal journeys of adjusting to life with a spinal cord injury, from initial grief and dark days to finding a path to a fulfilling life and a "new normal." This panel discussion is moderated by Dr. Jeanne Hoffman, a rehabilitation psychologist.
Conversations about Living.........with Spinal Cord Injury a 73 minute streaming video
Three men and one woman, all with longstanding spinal cord injuries, talk about their personal experiences living, surviving and thriving with their injuries. They share their initial reactions, adjustment, steps toward independence and thoughts about their injuries now.
Presented on May 13, 2008, at the University of Washington Medical Center.
1.6. SCI Video Blog
SCI Video Blog is a collection of tutorial videos posted by SCI individuals of all different levels of injury to visually demonstrate how they perform their daily life activities. The website allows individuals with new spinal cord injuries to search for videos based on their level of injury, ASIA level, completeness of the injury, and SCI complications, among other things. The website also allow writers and bloggers to share their knowledge or story with the world. For individuals or family members with a language barrier, the website plans on providing subtitles in many languages as well.
1.7. How to cope emotionally with a Disability
Wiki How-How to Cope Emotionally With Having a Disability 14 active steps plus helpful tips and general advice on coping after a spinal cord injury or disease onset.
1.8. Adjusting to a Disability is a Journey
"Adjusting to a Disability is a Journey" was written by Phil Pangrazio, CEO and president of Arizona Bridge to Independent Living. Mr. Pangrazio has lived with spinal cord injury for over 30 years. Read his encouraging words below or click on the download for a printable copy.
Adjusting to Disability is a Journey by Phil Pangrazio
If you recently experienced a significant physical disability, then you are about to embark on a journey that has been well traveled. In the early stages of disability, the majority of your thoughts and energy are dedicated to survival. Where will I live? How will I get around? Who will help me get showered and dressed? Who will prepare my meals? Will I have enough money? These and many more questions will leave you feeling very alone and isolated. What you have to remember, however, is that you are not alone!
This road has been traveled by millions of people before you. These people are your peers and they can help show you the way. Being open minded and willing to accept their guidance is critical. I am confident that if you listen and accept the knowledge of your peers you will be on your way to becoming truly independent. Maybe not in a physical sense, but on an emotional level, you will direct your life. You will be in charge. Only then can you live with dignity. But, it's up to you!
At first, the onset of a disability is much like being a newborn. There are lots of new things, unknowns, and much learning required to survive. For an infant, survival is dependent on a great deal of assistance from mom and dad. Reality to a newborn is based on dependency and feelings of helplessness. The early stage of disability is much like the experience of the newborn. Remember the time when you were left in the crib longer than you could tolerate? Mom wasn't far away, but it seemed like an eternity before she came to your rescue. You wanted to get out, but you couldn't. You wanted your independence, but the railings were too high. The more you fought, the more frustrated you got.
Having a disability is a lot like this experience. There are railings seemingly everywhere. The railings are the barriers. You will need to learn to eliminate them, or at least manage and adapt to them. Only then can you become as independent as your abilities and talents will allow. Importantly though, you have a choice in this process. You can be passive or active. I strongly suggest you choose the latter approach. Taking an active role or "taking charge" in choosing your destiny will reward you with the riches of self-esteem and the respect of others. But it does not happen over night! It takes time and persistence. Just like the newborn, a person with a disability must grow and mature.
Sometimes you must re-learn to do something that only months before you took totally for granted, like signing your name. You may have to adapt to a new and different body. But most important, you just need to gain experience in your new environment before you can effectively live within it.
Now you may be thinking, that may be true for some people, but I'm different. And it's true, you are. Each individual's experience with disability is unique. Some are born with a disability. Some acquire a disability during childhood. Some are injured as teenagers. Some experience an illness at middle age during their prime working years. Some become disabled in the midst of retirement. But I guarantee you there are others that have traveled on your road. I suggest you embrace them, as they will make your journey a much more pleasant one.
Reprinted, and distributed, by permission from The Bridge (July 2001), a free publication of Arizona Bridge to Independent Living. Phil Pangrazio is Executive Director; he can be contacted at (800) 280-2245 or (602) 256-2245 or email: firstname.lastname@example.org Published: 2007-09-05
1.9. Taking Charge after SCI
Todd Stabelfeldt is the consummate example of someone who has taken charge of his life under the most challenging of circumstances and has done it with humor and style. At the age of eight, Stabelfeldt was shot in the chin while he and his cousin were playing with guns, resulting in C4 tetraplegia (quadriplegia). That was 20 years ago; now he is a full-time professional, living on his own, financially independent and active in the community. Read this article now!
2. Communication, Dating and Relationships after Spinal Cord Injury
2.1. It Happened to Both of Us:Conversations with Couples
"It Happened to Both of Us: Conversations with Couples" is an 82 minute video with a panel of 4 couples who have faced the life changing event of a spinal cord injury. It is presented and moderated by the Northwest Regional SCI System of Care, University of Washington School of Medicine, Seattle, Washington.
When a person sustains a spinal cord injury, the impact is felt by the whole family, especially the spouse or partner. How does the partner feel, cope and adjust during this turbulent time when the injured person's needs are so paramount? How do roles and expectations change? How can a couple survive the stresses and challenges of such a life-altering event and go on to lead a satisfying life together? In this video, a panel of couples who were together before injury and are still together talk about their experiences and what they do to stay connected and maintain a healthy relationship.
2.2. Communication in Dating and Relationships after Spinal Cord Injury
- Presented on February 9 , 2010 at the University of Washington Medical Center.
- Does a spinal cord injury change the importance or nature of communication in a relationship? Most people you meet may know little or nothing about SCI. Does it make you wonder whether you can meet new people, get out and date, and have long term relationships? How can you put people at ease so they can feel comfortable asking all those questions they are probably thinking about, and how can you be at ease answering them? When and how do you start talking about the physical side of SCI, such as bowel, bladder and sexual function? In this forum video, our "expert" panel of single, dating and married individuals with SCI share their experiences with post-injury dating and relationships. SEE video on the related pages link below to our VIDEO RESOURCE ROOM
- Wives and Girlfriends of Spinal Cord Injury
WHO WE ARE
We are women who have partners with Spinal Cord Injuries. When everyone else goes home to their own lives, we are the ones that are still there. Our unique caregiver/lover dynamic can only be truly understood by others like us. We are creating a strong network of women around the world supporting other women who are dealing with this injury alongside their men.
WHAT WE DO
We have formed a meet up and support group exclusively for Wives/Girlfriends of men who have sustained a Spinal Cord Injury, where we can discuss our experiences and learn from one another. Our #1 goal is to provide outreach in our communities to ensure that we are there for women who are new to this life. We believe in creating a community of support, friendship and love with no judgements. We believe in the power of "in person" connection and friendship. We also function to connect women in dual role relationships with others close to them!
3. Books and resources
3.1. Internet Radio Program-Dialogues with Dan
"Dialogues with Dan" is an Internet radio program about disabilities. Each Tues. at 6:25 pm EST, Dan Windheim conducts an interview with a person with a disability or an agency that works with people with disabilities regarding dealing with challenges and finding success. His interviews have covered all topics of life, including music, art, sports and religion. Mr. Windheim has recorded over 330 programs to date and many are archived at: http://www.rocklandworldradio.com/program/dialogues/
3.2. The Total Wheelchair Resource Book
Corbet, Barry, et al. Spinal Network: The Total Wheelchair Resource Book, 3rd Ed., 2002. Available from Amazon. This is an excellent, broad, comprehensive reference for both the professional and consumer. Contains good, practical information and an excellent list of resources.