Parents need all the support they can find concerning children with a spinal cord injury (SCI). This summer, FacingDisability.com gave parents one more way to find it by placing some important resources behind the eyes of readers of Exceptional Parent Magazine.
In the article written by Stephanie Lollino, executive producer of FacingDisability, readers find very specific resources on topics such as, first days after injury, coping with new feelings, the future of a child’s education and job and even touches on marriage and family. The advice of Sarah Klass MSW, and director of spinal cord injury service at Shriners Children’s Hospital in Chicago, is highlighted in the article.
“I think that there’s a lot of hope for parents, Klass tells readers. “…to know if their child does sustain an injury, they will have a high quality of life, and can do so many things in the world that they always had hoped they could do.”
The creative leader of FacingDisability.com and president of The Hill Foundation, Thea Flaum says, children with SCI are just as resilient and capable as able-bodied kids that sustain injuries. “They need extra encouragement from everybody in their lives – including teachers, doctors and caregivers. They can grow up to lead full and successful lives.”
There are several informational pediatric videos on FacingDisability.com that highlight specific questions covering topics parents have when raising or caregiving a child with SCI.
Do you have a story to share? Upload it now on our new video app.
How do people with spinal cord injuries really feel about their bodies when it comes to sex and intimacy? Graham Streets, founder of an online specialty group called the Mad Spaz Club, came up with a unique idea to help people understand.
By using pictures with thought-provoking graphics written on the skin of men and women in wheelchairs, Streets shows the intimate and sometimes dark secrets of both the disabled and those they love.
Streets was injured in a motorcycle accident 18 years ago. “I was intelligent charismatic and sexy-fit,” he says. “It is hard to see guys like me [in the hospital], knowing I stand to lose it all– my work, business, six pack abs and positive attitude… And in looking at the other 45 patients in the ward I soon realized I was in for the fight of my life.” Inventing the interactive website, www.Streetsie.com helped him do just that.
As a man with quadriplegia himself, Streets created the pictures to illustrate that “…life in a wheelchair raises many deep emotional thoughts and feelings regular people never have the benefit of hearing or have to contemplate.” He says that partners and lovers of wheelchair users often have thoughts they don’t express, and questions “they don’t feel comfortable asking.
Streets took it a step further by opening the topic up to the website’s subscribers. He says: “A spinal cord injury resulting in paraplegia or quadriplegia invokes many heartfelt emotions and secret thoughts. You don’t have to talk about it,” he says. “Just write it on your skin and take a photo. Or send us your photo with what you would like written on it. You do not need to be disabled to make a submission. We have had a tremendous response to the concept and to the stunningly beautiful images in the collection so far.”
You can see the entire collection here and learn how you can submit a photo here.
“Life Itself,” the highly acclaimed new movie about the life and work of movie critic Roger Ebert, was just released to theaters nationwide. Thea Flaum, the producer who created the landmark television series with Ebert and Gene Siskel, is featured prominently in the film.
Thea Flaum is also the creative leader and driving force behind this website, which she launched three years ago. A spinal cord injury in her own family made her aware of the need for information and support for families facing spinal cord injuries.
She came to her work on FacingDisability.com following a 35-year career as an award-winning television producer. So it is not surprising that she would create a website based on videos as a resource.
Ian Burkhart, 23, recently became the first person with quadriplegia to move his wrist and hand using the power of his brain and an experimental new device called Neurobridge. According to its scientist-developers at Ohio State University’s Wexner Medical Center and the Battelle Memorial Institute, the system works through “…an electronic neural bypass that reconnects the brain directly to muscles, allowing functional control of a paralyzed limb.”
Burkhart is the first of five potential applicants in a new clinical trial to test the device.
“It’s much like a heart bypass, but instead of bypassing blood, we’re actually bypassing electrical signals,” said Chad Bouton, research leader at Battelle. “We’re taking those signals from the brain, going around the injury, and going directly to the muscles.”
The Neurobridge technology starts by implanting a tiny microchip in the brain that transmits brain activity to a specialized sleeve, which communicates movement signals to the paralyzed limb. For Burkhart, brain signals bypassed his injured spinal cord in order move his hand.
“I’ve come to accept the fact that I’m not able to move my arm and hand,” Burkhart says. “To be able to fulfill the hope that I will be able to again someday, really motivated me for the future and gave me a lot of hope for what life would be like.”
Bouton calls this “…an important first step and a new day for those who have disabilities. It’s really a day forward.”
Is surviving a life-altering injury inspirational? Or is it simply survival? When a person overcomes a difficult situation, the results may seem amazing to others. When people with a spinal cord injury encounter someone who says, “What you’re doing every hour of every day – living in a wheelchair and making it through – is inspiring to me,” what they often hear is surprise and pity. After all, how can all the everyday things people do be inspiring just because they’re being done while in a wheelchair?
If more proof is needed that the people with disabilities should be viewed the same way as everybody else, Australian comedian Stella Young, lays it all on the table. During a recent TED Talk, Young explained how she was given a community achievement award in her small town as a teen – just for living there. It was then that she began to think about how different she really must seem to others.
“It speaks to this kind of assumption that people with disabilities are brave because our lives are horrible,” Young says in a separate interview. “And that’s not true at all.” Her straightforward explanation sends home the message that as a society it’s not healthy, or realistic, to label all people with disabilities as inspirational.
You can see her informative, and refreshingly funny Ted Talk here:
As you know, navigating the world in a wheelchair means you will inevitably encounter a lot of well-meaning, but annoying behaviors. Here are the ones that wheelchair users tell us are their top five pet peeves.
Seeing the Wheelchair– Ignoring the Person in It
Please don’t ask their companions what the person in the wheelchair wants, such as: “What does he want to eat” or “Where does he want to go?” Despite the fact that he’s sitting down, his hearing, brains and vocal cords work just fine. It’s rude to treat the person in the chair as though he is invisible.
Helping Without Asking
Don’t rush to help. Always wait to be invited, even if you see someone appearing to struggle. Most wheelchair users are much more comfortable with managing day-to-day activities on their own. Even if it’s hard, most would rather do it themselves.
Hands Off the Wheelchair
Please avoid touching, rocking, tapping or leaning. Many people regard their wheelchairs almost as an extension of their bodies, as well as a lifeline to freedom. After all, you wouldn’t just go up to a stranger on the street and put your arm around them or tap them on the knee.
Take a Seat Yourself
Find a chair and sit down so you are eye-to-eye when you are having a conversation with a person in a wheelchair that lasts more than a few minutes. It’s awkward and uncomfortable for the person to be looking up at you all the time; it doesn’t feel like a conversation between equals.
No Parking, No Kidding.
This is probably the number-one pet peeve of wheelchair users. It’s infuriating to see an obviously able-bodied person taking up a handicapped space. And that includes the striped space at the side, which is marked off to make it possible to lower a wheelchair lift. Spaces marked handicapped can be few and far between. If you see someone using one for his or her own convenience, speak up. It’s anti-social behavior, like spitting in the street—only worse.
Got a pet peeve of your own to add? Tell us about it in the space below.
Click here for an Interactive Spinal Cord Injury Map.
Actually, there isn’t any difference in meaning. Both words apply to paralysis of all four limbs. And both terms are used interchangeably these days.
The difference is in the derivation of the words. The word “Quadri” means four in Latin; the word “Plegia” means paralysis in Greek. So the roots of the word “quadriplegia” which means paralysis in all four limbs, come from both Latin and Greek. It combines two different languages.
The Greek word for four is “Tetra.” Combine that with “plegia” and you have a word with Greek roots for both halves. The British have always used the term “Tetraplegia” for four-limb paralysis, so they are not combining Latin and Greek words.
Such distinctions are important to the English, but Americans don’t seem to mind. Although there was a movement in the 1990’s to try to adopt “tetraplegia” in America, it never really caught on outside of the medical literature.
That’s why most Americans still continue to refer to “quad rugby,” for example, and why the word “quadriplegia” remains in common use.
Incidentally, since “para” is the Greek word for two, and “plegia” is Greek for paralysis the word “paraplegia” all comes from the same language of origin—Greek.
Progress toward the day when human stem cells can be used to treat spinal cord injury patients may have moved a bit closer, according to a preliminary results of a study by Stem Cells, Inc. reported at the recent annual meeting of the American Spinal Injury Association on May 19, 2014.
The presentation included data from five subjects with thoracic (T2-T11) spinal cord injuries. All were treated by direct transplantation of HuCNS-SC (purified human neural stem cells) into the spinal cord. All were treated with immunosuppressive drugs prior to the transplants. Time elapsed from the dates of injury ranged from 4-24 months.
The researchers saw significant post-transplant gains in sensory function in four of the five patients, with the first changes beginning 1-3 months after the transplants. “We are seeing multi-segmental gains and a return of function in the cord of multiple patients. This indicates something that was not working in the spinal cord now appears to be working following transplantation,” said Dr. Stephen Huhn, vice president, CNS clinical research at StemCells, Inc.
“These results are exciting with respect to the expansion of this trial into patients with cervical injury because even a gain of one to two segments in cervical spinal cord injury patients can allow for additional function in the upper extremities,” says Dr. Hahn. The trial involved three centers: the University of Calgary; the University of Toronto; and Balgrist University Hospital at the University of Zurich. The company plans to begin cervical spine injury trials this year.
A promising breakthrough in the treatment of long-term paralysis was revealed in a recent scientific study. With the help of electrodes placed near the spinal cord, four men who had been paralyzed for more than two years developed the ability to move voluntarily, although not the ability to walk.
The five-year research study combined rigorous physical therapy with electric stimulation of the spinal cord. It found that direct electrical stimulation enabled voluntary movement in patients who were thought to be completely paralyzed. Over a five-year period, the men developed the ability , when stimulated, to wiggle their toes, lift and swing their legs , move their ankles and sit up without support. Currently, the stimulator is able to work on only one leg at a time, so it can’t be used to restore walking.
This video from CNN illustrates how it works.
Before their spinal cord injuries, the patients’ brains would have sent the key electrical signals to their limbs. Now, electrical stimulation is providing the impetus as a patient tries, practices and refines movements. The spinal cord stimulation “could be reawakening …connections” severed by the injury, said UCLA researcher V. Reggie Edgerton, who co-wrote the study.
The trial’s success may mean that “a large cohort of individuals, previously with little realistic hope of any meaningful recovery from spinal cord injury , may benefit from this intervention,” said Dr. Roderic Pettigrew, director of the National Institute on Biomedical Imaging and Bioengineering, which supported the research.
The complete study was published in Brain, The Journal of Neurology: “Altering spinal cord excitability enables voluntary movements after chronic complete paralysis in human.”
FacingDisability is shedding a light on the “hush-hush” topic of sex after spinal cord injury at the American Spinal Cord Injury Professionals (ASCIP) 2014 Conference in Saint Louis, August 31 through September 3. FacingDisability President, Thea Flaum and Sara Klaas, Director of Business Development at Shriners Hospitals for Children Chicago, will be giving a presentation on the continuing need for information on and the affects of sexuality after spinal cord injury based on the extensive use of sex-related material.
The pain, uncertainty and confusion of the first post-injury weeks, questions about sexuality often don’t get asked or don’t get answered. In addition, most injuries are sustained in early adulthood, at just the time when individuals are exploring their own sexuality.
So where do they go? They turn to the Internet. There are very few resources with information on sex specifically after spinal cord injury, and through Google Analytics, we found that the specific content viewed by all visitors (130,000 people) to FacingDisability.com in 2013 provides more evidence of the need for sex information and support.
A 2013 online survey of FacingDisability.com users rated “Sex and Fertility” (36 %) and “Adjusting to Social Life in a Wheelchair” (38%) among the “Most Helpful” videos by experts. The videos relating personal experiences that were deemed “most helpful” were those dealing with “Relationships after SCI” (45%) and “Social Life and Sex” (32%).
We believe FacingDisability.com is a helpful sex resource for those with SCI, their family and friends, as well as healthcare providers on rehabilitation teams. We hope to bring more awareness to the topic at ASCIP and look forward to sharing our feedback this fall.
FacingDisability.com is an informational and support website for families facing spinal cord injuries. The website does not provide medical advice, recommend or endorse health care products or services, or control the information found on external websites.
The Hill Foundation is a 501 (c) (3) private operating foundation established by Robert Hill and Thea Flaum
737 N. Michigan Ave., Suite 1560, Chicago, IL 60611. Phone: 312-284-2525 / Fax: 312-284-2530 / email@example.com