Pain After Spinal Cord Injury –

What Do The Experts Say?

A new fact sheet that summarizes the latest medical advice about dealing with pain after SCI has just been released. It’s a publication of the Model Systems Knowledge Translation Center (MSKTC), which has collected data about pain from the 14 best SCI research hospitals across the nation, and put it into plain language that people can understand and use in their everyday lives.

Pain_after_SCI_iStock_000019355827XSmallHere is a brief summary:

A majority of people with SCI experience varying types of pain, both in areas with normal sensation as well as in areas that have little or no feeling. The pain is very real. It can come and go, and negatively impact the lives of patients’ even years after they’ve been rehabilitated. The fact sheet outlines these steps for dealing with pain.

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Paralyzed Man Regains Some Use of Legs

Through Radical Cell Transplant Surgery
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Darek Fidyka

A paralyzed man in Poland is moving again due to a pioneering treatment involving the growth of new nerve pathways in his spinal cord. The therapy is said to have given Darek Fidyka, 40, the ability to use his legs — even though he sustained a spinal cord injury nearly four years ago.

Professor Geoff Raisman, chair of neural regeneration at University College London’s Institute of Neurology, led the United Kingdom research team. These doctors lay their claim to 40 years of research stemming from the olfactory bulbs, responsible for our sense of smell, in the brain. “The olfactory bulb is the only nerve tissue in the brain that can be regenerated,” Raisman says, “We believe that this procedure is the breakthrough which – as it is further developed – will result in a historic change in the currently hopeless outlook for people disabled by spinal cord injury.”

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Study Discovers Hot Website Topics: Sex, Dating, Relationships

sex.hush.hushInformation about sex, relationships and fertility after SCI proved to be the most highly viewed subject areas for visitors to FacingDisability. com. In fact, two out of every 10 website visitors viewed videos on marriage and children, intimate relationships and sex and fertility.

A year-long analysis of nearly 100,000 website visitors who viewed over 300,000 pages revealed that 21 percent of them watched videos that pertained to social life, fertility and family relationships. Most frequently viewed videos answered these questions: What About Sex and Dating? What’s the first thing to know about having sex after a spinal cord injury? Can women still get pregnant after a spinal cord injury? What are common psychological obstacles to sex for men after a spinal cord injury?

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What Recovery Means to a Former Olympic Swimmer

Gold medalist Amy Van Dyken-Rouen says she’s a better person for what happened to her. On June 6th this past spring, the athlete was off-roading with her husband, former Broncos punter Tom Rouen, when her ATV slid off the road and down a six-foot drop. Fortunately, Van Dyken-Rouen survived. She had sustained a spinal cord injury that left her with paraplegia. Click here to see the video.

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Amy and her husband Tom Rouen — click to view her recovery story

The shocking news of her spinal cord injury hit media around the world with headlines like, “Former Olympian Paralyzed After Accident,” and “Decorated Olympic Swimmer Severs Spine.

Although most reports have described Van Dyken-Rouen’s injury as a severed spine, her physician at Craig Hospital in Denver, Colorado, Dr. Mark Johansen explains, “Severed really isn’t an accurate term. Her spinal cord is severely damaged. Some of the nerves may have been separated, but there’s still architecture in there, so it’s not completely severed.”

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FacingDisability Featured in Exceptional Parent Magazine

Website Connects Parents Caring for Children with Spinal Cord Injury

blogParents 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.

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Intimate Photos of Wheelchair Users Cast Sex in a New Light

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.

BSECRET.WCHy 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.

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Roger Ebert’s TV Producer Creates FacingDisability.com

“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.

image6_0002 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.

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Paralyzed Man Uses Brainwaves to Move Hand

His thoughts create movement

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.”

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“I Am Not Your Inspiration”

Straight Talk The World Needs To Hear

Ir901909_9171593s 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?

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What Gets Under Your Skin?

Wheelchair Users’ Pet Peeves

Wheelchair photoAs 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.

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