The Review Team
Jen sustained a C6 spinal cord injury from a motor vehicle accident in 2001. She resides in Candia, New Hampshire. She currently attends Northeast Rehab Hospital in Salem, NH for physical therapy. Jen is active in the NH Chapter of the National Spinal Cord Injury Association, where she serves on the board of directors. She enjoys hand cycling, swimming, being in the sun and reality television. Jen was happy to participate in the SCI Guide Project because it gave her a chance to experience and learn from many useful websites. She hopes the information obtained from the Project will be helpful to others with spinal cord injuries.
Charlie has C6 quadriplegia. He enjoys wood working, handcycling, kayaking, canoeing, scuba diving, travel, nature …etc …etc He got some good info sites out of the SCI Guide Project. His advice for the newly injured is to "keep your mind full and your bowels empty".
I was 42 the summer of 1991 when I sustained my spinal cord injury. It was a freak accident with a tree limb – it fell and hit my head while I was walking my dog with friends. Technically, I am an incomplete quad ( my injury was at the C 4/5 level), but after three months of a halo and rehab, I did go home walking.
I feel very connected to the SCI community. On both a personal and professional side, it has been a great source of information. However, mostly it has brought me into contact with some amazing people – some who have become lifelong friends.
My experience with the CAB project was a positive one. My daughters tell me I am “technically challenged”, so primarily working on the project helped me to feel comfortable navigating the internet. I also acquired sci knowledge that I didn’t have before, and, in addition, found answers to questions I had concerning my own sci issues.
The world of spinal cord injury can be quite overwhelming for, not just the newly injured, but the not so newly injured as well. This SCI guide we have helped put together contains a wealth of information in any and all areas of concern, and it is only a “click” away.
Dave has T4 paraplegia. He has many interests, including snow skiing, handcycling, swimming, and lifting weights. He is involved with the Greater Boston Chapter of the National Spinal Cord Injury Association, Maine Handicapped Skiing and Central Boston Elder Services. He says that the SCI Guide Project "forced me to sit in front of the computer for more than a half hour to learn that there are so many good websites out there for people with SCI." His advice for the newly injured is to "keep your spirits up; you can still do anything you want to do, go anywhere you want to go. You will meet real people with real agendas. Use the websites as guides and don't hesitate to contact the Greater Boston Chapter of the NSCIA at email@example.com if you feel lost."
My name is Jon; I'm a 35 year-old, C2-C3 vent-dependent quadriplegic. Ten years ago I sustained a spinal cord injury from a cliff-diving accident. In 2006, I graduated with an Associate's Degree in history, and am considering going back to school for my Bachelor's. I do peer visitations (visiting with newly injured patients with a SCI similar to mine). I enjoy hanging out with friends, barbequing, and going to shows (music).
What I got out of the SCI Guide Project was a better understanding on how the Internet works. It gave me a chance to see what kind of information was out there for people with spinal cord injuries. I found a wealth of information valuable to anyone with a spinal cord injury, no matter what level of injury.
My words of advice to the newly injured are to try and stay as positive as you can. Keep yourself active (a hobby, school, work, volunteering, etc.). No matter how much function you may have lost, you still have your mind, which is more powerful than any muscle in your body.
Tony broke his neck at the C5 level in a surfing accident in 1977. After completing High School, he got a Bachelor of Arts degree in Geography and Earth Sciences. He completed a contract with the U.S. Census Bureau, then took up web site development. He tutors in various subjects and volunteers several times a week.
Throughout his 31 years post-injury he has suffered from the common secondary conditions of spinal cord injuries: UTI's, pressure sores, and blood pressure issues, to name a few. Generally he is quite healthy with all things considered. He attributes his health to good diet, plenty of water, range of motion twice daily and a positive outlook.
Besides computer work, Tony gives presentations on understanding disabilities, specifically spinal cord injuries. He is active in his local Independent Living Center on issues of community access (mass transit, sidewalks and businesses) and healthcare concerns through legislative action and community groups.
His hobbies include reading, playing Scrabble, watching foreign films, listening to Jazz music and being outdoors.
Not long ago, Remon, a native of Cambridge, Massachusetts was a promising poet, a talented singer and rapper, and a recent college graduate looking forward to a career in education. Known as "Rey," he was always on the go and loved to make people smile. Much of that hasn't changed since five years ago, when a car accident left him paralyzed from the chest down and with limited use of his right arm. With the introduction of Assistive Technology and computer-related aids his sense of independence is growing. And through volunteer affiliations with organizations such as Easter Seals, Partners for Youth with Disabilities as well as the Consumer Advisory Board, Rey has been getting more involved and out of the house more often. "I believe the first step in bettering any situation is in educating oneself; and through what we have put together with the Board, I hope to simplify the process for anyone who may find themselves in a similar situation in the future."
"My Abilities will always surpass my disabilities!" - Reyality '02
Caitlin is a 32 year-old woman who sustained a spinal cord injury (SCI) in 1991. She has been married for five years and she met her husband on the Internet! She attended Rehabilitation for her SCI at Boston Medical Center where she resided for five months. Caitlin was extremely lucky to spend five months with many extraordinary patients, nurses, doctors, and physical and occupational therapists. It was on F5, the former SCI Unit, that she began the long adjustment process of accepting her SCI. It was also there that she began to realize how lucky she was to be alive after facing death.
After leaving rehabilitation, Caitlin began the rigorous process of accepting life outside the walls of rehabilitation and adjusting to the "real world" as a person with a newly acquired disability. She went back to high school and attended outpatient physical therapy.
During the summer of 1992, Caitlin attended Shake-A-Leg, a second-stage rehabilitation center for individuals with spinal cord injuries. This is where she believes her life truly changed and she began to realize that the only real obstacles she would face in life were ones that she placed upon herself. Aside from Rehab, this was the only place where several people with SCI surrounded her. It gave her an opportunity to bond and form friendships with many of these individuals and to learn from their experiences. She attended Shake-a-Leg for four summers and each year Caitlin would return home rejuvenated. She was ready to take on life's challenges and make the best of them. Her experiences there gave her a sense of pride as a woman with a disability.
After high school, Caitlin attended U–MASS Boston for two years where she majored in Psychology. She wanted to pick a major that would ultimately allow her to help people, society, and individuals with physical disabilities. In dire need of escape from the New England winters, she applied to a student national exchange program at a small state school in Northern California called Sonoma State University (SSU). After living in California for a year and loving the warm climate and liberal attitudes, she decided to stay. There Caitlin majored in Psychology with a minor in Women & Gender Studies.
During college, Caitlin was very involved with the Disabled Students Club on campus, as well as a faculty–appointed disability advisory board. She served as both Vice President and President of the Disabled Students Club and was able to accomplish many things as an officer for the club. One example of her accomplishments was creating and implementing a campus-wide disability awareness day.
After graduating from college, she worked at the National Spinal Cord Association Greater Boston Chapter (NSCIAGBC) in Woburn for a little under a year before attending graduate school. She worked as a housing specialist and helped newly injured clients obtain accessible housing. It was very tempting to postpone graduate school and continue working for NSCIAGBC but she knew that in order to achieve her ultimate career goals she would have to obtain a graduate degree.
After graduating from SSU, Caitlin applied to graduate school to obtain her Masters in Social Work. She began her graduate degree at the University of Georgia (UGA) in the fall of 2000 and graduated in the spring of 2002. For the past six years, Caitlin has worked with the United Stated Department of Agriculture in the Food Stamp Program.
Lisa, CPA, President - is a Certified Public Accountant who has previously worked for one of the "Big 4" public accounting firms, KPMG, LLP in Boston. For four years, she worked on SEC banking clients in New England, Germany and the Netherlands. A motor vehicle accident in November 2000 resulted in a T4/5 incomplete spinal cord injury. Finding little in the way of services in New Hampshire drove her to establish the New Hampshire Chapter of the National Spinal Cord Injury Association. Lisa is also the Vice Chair of the Governor's Commission on Disability Architectural Barrier-Free Design Committee, the Chair of the Administration Committee, and 2nd Vice Chair for the Statewide Independent Living Council, a member of the State Brain and Spinal Cord Injury Advisory Council, a member of the Advisory board to the New England Regional Spinal Cord Injury Center and The Center for Rehabilitation at Boston Medical Center.
Lisa began working on the SCI Guide Project in the hopes of ensuring valuable Internet resources reach those with individuals affected spinal cord injury and disease. In the process, she says, "I met many wonderful people and learned about lots of good resources to pass along to my clientele at New Hampshire Chapter of the National Spinal Cord Injury Association." Other interests/hobbies include: Movies, drawing, painting, cooking and shopping.
I'm a female C-4 Quadriplegic born in the mid ‘60s. I was separated from my husband at the time when I was injured in a car accident in 1998. At the time my 2 girls were 4 and 7 years old. I'm currently living with them and my parents. I operate my computer using Dragon Dictate (a voice control program) and a Smartnav AT hands free mouse made by Naturalpoint with a feature called dwell clicking. With these 2 things I am able to control almost every aspect of my computer without assistance. Initially training my voice program took a while (and required a little assistance from others). Once it was trained and I had the hands free mouse I found I could do just about anything I had previously done. Where I have no mobility below my shoulders I find the computer to be a great outlet. With these assistive devices I have an area where I can do things by myself.
Prior to my injury I was working for a biotech company and going to school evenings for a bio technology degree focusing on genetic engineering. I wanted to work on cancer research and possibly genetic diseases. I also enjoyed sculpting, reading, nature, various types of music, and just being with my kids.
Unfortunately, I suffer from autonomic dysreflexia multiple times per day which prohibits me from working but I still manage to enjoy life. I have discovered that many of previously enjoyed activities need to be modified but can still be enjoyed with a little ingenuity. Plus just being able to watch my girls grow is very rewarding. It took a year or so to figure out ways to continue with certain activities. Just don't give up. I have also discovered a group of friends online that I love chatting with. It is nice that the chair isn't the first impression. I also discovered new areas that interested me. I do spend a lot of time online and learning.
This project was a lot of fun to do. I discovered some things I didn't even realize I'd be interested in until I was asked to review the sites. Things I found that interested me greatly but I wouldn't have thought to look for on my own. I would highly suggest exploring all the sites here. You might find something you didn't even know you were looking for. Or services you didn't know were available.