Top 10 SCI Research

Questions For 2015

top10What are the most important questions that new research can answer about spinal cord injuries?

The editors of the highly respected British medical research journal, Lancet Neurology, decided to find out. They started with over 700 questions posed by 400 respondents, more than half of whom have spinal cord injuries.

At a final consensus meeting, a group of individuals with SCI, caregivers and health professionals agreed on their top ten priorities for future research. Here is the final list, published in the December issue of Lancet:

1. Does activity-based rehabilitation, including functional electrical stimulation (FES) coupled with physical activity and hydrotherapy improve outcomes such as muscle function and neuroplasticity?

2. Does stem-cell therapy result in improved outcomes and is this dependent on the type of injury (eg, acute or chronic; complete or incomplete)?

3. Does the government healthcare plan outside the hospital, including physiotherapy, after discharge from hospital, improve health and well-being

4. What bladder management strategy is most effective in reducing the number of urinary-tract infections and secondary complications?

5. Does early mobilization, or a period of 4–6 weeks of physically active bed rest, (ie, physiotherapy exercises while lying in bed) result in improved patient outcomes after surgical spinal column stabilization?

6. Does discharge from a hospital to a physically enabling environment improve quality of life?

7. Does a special rehabilitation service, which includes multidisciplinary team planning, improve health and well-being?

8. Do interventions such as controlled fiber and fluid intake improve bowel function and quality of life?

9. What are the effects of aging on the development of complications, such as spasticity and bladder and bowel incontinence, and need for home-based support?

10. Does early diagnosis and treatment lead to improved outcomes for people with (a) Cauda Equina syndrome (drop foot) and (b) transverse myelitis (Multiple Sclerosis) (including relapses)?

The list is part of a multidisciplinary priority-setting partnership that will define the British research agenda for spinal cord injury for the next 5–10 years.

We’ll keep you posted on what they find.

 

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Dr. Henry B. Betts

1928-2015

Henry-B-Betts-Obit-PhotoDr. Henry B. Betts, a giant of rehabilitation medicine, passed away on Jan. 4, 2015 in Chicago. He was 86.

“He was an extraordinarily gifted person, a tireless and compassionate physician and a remarkably thoughtful and passionate individual,” remembers Dr. Joanne C. Smith, CEO of the Rehabilitation Institute of Chicago.

“Dr. Betts was one of the first people I consulted for guidance,” said Thea Flaum, founder and creator of the FacingDisability.com. “His wise advice, insights and belief in the website remain an inspiration to us today.”

Fifty years ago, Dr. Betts created a revolutionary program at Northwestern University’s Medical school, a new medical specialty called Rehabilitation Medicine. The idea was to not merely treat the disability, but also to help the patient discover a new way of living.

By creating a partnership between doctors and patients, he re-defined the treatment of people with disabilities. He established an academic program for medical students that has become one of the largest residency programs in the country. It trains more physicians in rehab medicine than any place in the world.

Under his leadership, the Rehabilitation Institute outgrew the small, outdated warehouse where it began to become the modern 18-story, 165-bed facility we see today. It has a comprehensive system of care that has earned an international reputation for innovation, patient care, research and education. It has been named the “number-one rehabilitation hospital in America” by U.S. News and World Report for the past 26 years.

“Henry Betts was more than a doctor, he was an advocate for disability rights,” said Flaum. “His work, and his strong vision are at the heart of disability culture. After all, he helped to invent it, by putting a human face on the whole idea of rehabilitation. In a nutshell, he guided the work of rehabilitation medicine into a world respected specialty that inspired patients and doctors to find the best in themselves.”

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“I Am Not Your Inspiration”

Remembering Stella Young -- A Re-Post

BlogStella Young, a comedian, journalist and disability advocate, died unexpectedly last month. In her honor, we’d like to share a blog post we wrote last summer on her powerful TED speech, in which she discussed a few of the backward misconceptions some have of people living with disabilities. Also be sure to watch her talk from TED located at the bottom of this post.

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Pictures of People With Disabilities

Featured on New Website

Positive images of people enjoying all aspects of life while sitting in their wheelchairs have historically been hard to find. But no longer.

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Image Courtesy Rachelle Chapman Friedman

Rachelle Friedman, who was injured at her own bachelorette party after being playfully pushed into a swimming pool, is promoting a new website that features compelling images of wheelchair users involved in everyday life.

Jennifer Frankfurter for PhotoAbility

They include pictures of people using wheelchairs while enjoying energetic sports activities, traveling to exotic places and of families just having fun together.

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Giving Thanks

Remembering Jeff Shannon; A re-post from November 2013.

FB profile (3)Jeff was a veteran writer on disability issues, a longtime movie reviewer and film historian as well as a regular contributor to FacingDisability.com. Jeff was also a C-5/6 quad, who was injured in 1979 at age 17. We are proud to have the thoughtful, provocative and honest voice of Jeff Shannon, and in his memory, would like to share his 2013 Thanksgiving FacingDisability blog post, “Giving Thanks on the 2-for-1 Plan.”

 

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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
Polish.man

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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