BLOG – Dr. Lawrence C. Vogel is Co-Editor of a New Book on Pediatric SCI

Spinal Cord Injury in the Child and Young Adult

Children with SCI need specialized care throughout their childhood and teenage years.  Screen Shot 2015-10-01 at 1.04.44 PMHowever, because spinal cord injuries are relatively rare, few pediatrician have experience in the care that children need.

Spinal Cord Injury in the Child and Young Adult covers the vast territory of pediatric SCI all in one place. According to Dr. Vogel, chief of pediatrics and assistant chief of staff at Shriners Hospitals for Children — Chicago, and a professor in the department of pediatrics at Rush Medical College, children with pediatric-onset SCI face health system gaps, especially in the transition from pediatric to adult care and the conversion from parent-controlled health care to self-management.

The book is intended for clinicians of all disciplines who may only occasionally care for youth with SCI. But it’s also helpful to those who specialize in SCI as well as clinical and basic researchers in the SCI field. Topics include; new developments in pediatric SCI research, current standards for optimal care, areas lacking scientific evidence, and recommendations for clinical practice and future research.

We interviewed Dr. Vogel about his book:

Q: What are some of the new developments in pediatric SCI research?

Dr. Vogel: We are studying the psychosocial development of kids with SCI throughout their lifespan including their outcomes as adults, plus looking at their caregivers and the mutual impact that caregivers and kids with SCI have on one another.

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Lawrence C. Vogel, MD, FAAP, CLCP

We are [also] working on ways to evaluate outcomes (such as activity, participation, neurological and functional status) that are appropriate for children of different ages, and that hopefully can be used to track their progress throughout their lifespan.

In respect to mobility, both power and manual wheelchairs appropriate for children as young as one year are becoming available. It is critical we assure that kids of all ages have the means to be mobile in their community so that they may fully participate in society.

Q: What are some of the more difficult, or unknown factors children with SCI face as they transition to adulthood? Continue reading

BLOG~Back to School: Stories of Success on Campus

Our Article Appears in "New Mobility Magazine" this Month
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September, 2015 Issue

Going to college is a major life change for anyone, and it may present an especially daunting challenge for wheelchair users. Yet students who use wheelchairs frequently report they can usually find their way around accessibility problems. The main issue, they say, is figuring out how to make the “back to school” transition.

The back-school-article, which is featured in the latest issue of “New Mobility” magazine, was written by FacingDisability’s Executive Producer, Stephanie Lollino. It focuses on how students with SCI prepare themselves to attend a college or university whether they’re staying in town, or attending a school hundreds of miles from home.

“Once you’ve set the goal that you’re going to do it,” says Kris Cichowski, founding director of the LIFE Center at the Rehabilitation Institute of Chicago, “make sure you’re medically ready. Do you have your care down? And maybe that doesn’t mean you do it yourself, but can you instruct other people? Have you put yourself out in the community? Tested the waters? I don’t think there’s ever a time you can say, ‘Yes, I’m totally ready right now,’ because a lot of times you have to jump off and see how it works.”

Following are stories of people who took that jump and discovered they handled college just fine. Continue reading

BLOG ~ ADA at 25: The Changing Face of Disability

Guest Blog by, Marca Bristo

Disability rights leader Marca Bristo, founder and CEO of Access Living of Metropolitan Chicago, wrote this commentary which appeared in the “Chicago Tribune” for the 25th anniversary of the Americans with Disabilities Act.  It’s an important summary of the advances brought by the ADA and what still remains to be done.


For people with disabilities, 25 years under the ADA has opened a new world


Marca Bristo

One day when I was 23 years old, back in 1977, I was hanging out at Lake Michigan when my friend’s dog knocked my shoes in the lake. I dove in to retrieve them and broke my neck, leaving me paralyzed from the chest down.

It didn’t take long to realize my world had changed. People immediately treated me differently because of my wheelchair — I lost my job as a nurse, I lost my home, I lost my health insurance. I couldn’t use public transit, and I couldn’t get into many public places without entering through the service entrance — that happened more times than I care to remember.

America in 1977 was a completely different country for those with disabilities. The prevailing message I kept hearing was that I needed to “adjust to my disability.” It never occurred to me that society had it wrong. In spite of my activist spirit and the historical civil rights context in which I was raised, I was on my own to “cope” with this new reality. Continue reading

Blog ~ Mothers on Wheels

Pregnancy After Paralysis

The desire to be a mother is an impulse that begins in childhood for most women. But once a spinal cord injury occurs, many women assume having a baby is just not in the cards for them. They are concerned that their bodies can’t handle a pregnancy, or that they can’t be a good parent because they’re in a wheelchair. However, the truth is that women with SCI are able to carry babies to term, and to become incredible mothers.





A new fact sheet on pregnancy and SCI that was just published by the Model Systems Knowledge Translation Center (MSKTC) highlights these facts:

  • Having a spinal cord injury does not affect your ability to naturally become pregnant or to carry and deliver a baby. It’s easy for a woman with paralysis to become pregnant.

Continue reading

BLOG ~ Videos in Chinese

SCI information spreading across the world

Does a spinal cord injury have a language barrier? When it comes to paralysis, the SCI Foundation in Taiwan doesn’t think so. The group has translated 20 videos from into Chinese and is featuring them on its new website.

On a recent trip to Canada to attend an SCI conference, the Taiwanese group learned there

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An image from the Taiwanese website

were many international groups searching for an alliance. CEO, Hsin-Ping Hung, said he was inspired during his trip by the people he met, and the new developments in SCI outreach and awareness. He and some of his dedicated colleagues have developed a website Continue reading

BLOG ~ Paralyzed Officer Retails Applesauce

Incredible Recipe Was His Mother's

Jim Mullen as a young police officer

It’s been nearly 20 years since a violent accident happened to Jim Mullen, a city of Chicago police officer, resulting in quadriplegia. A young father at the time, and only beginning his life, Jim says he tried always to look on the bright side. “My new reality inspired a passion in me,” He says, “to show everyone that life is what you make out of it. Ever since that day, I’ve remembered that dreams are worth chasing.”

Jim’s dream manifested itself in the form of love for his mother’s home cooking — especially her homemade applesauce. “Even when I was 12 years old, I referred to it as apple pie without the crust. With a little encouragement, Jim convinced his mother, Continue reading

BLOG ~ Come Sail Away!

Adaptive Sailing is Good for You
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Paralympic Sailors 368 Dan Nerney/Clagett Regatta

Sailing is a sport that everyone does sitting down, and adaptive sailing is not a new sport.  It’s even part of the Olympics. However, new research has found that using a virtual sailing simulator on dry land enabled people with SCI to gain confidence before hitting the water.  In addition, the study found that learning to sail had therapeutic benefits for both body and mind.

Researchers at the International Center for Spinal Cord Injury at Kennedy Krieger Institute at Johns Hopkins in Baltimore, MD published the results of their research in a recent issue the American Journal of Physical Medicine & Rehabilitation.  Once on the water, participants were able to perform specific sailing maneuvers such as steering the course, sail trimming, tacking, jibbing and mark rounding. They described their on-water experiences as “exhilarating and great fun”. They added Continue reading

Go in Feet First — Don’t Dive

“Diving is simply not worth the risk,” says Dr. Herndon Murray, medical director of Screen Shot 2015-07-02 at 2.24.22 PMShepard Center’s SCI program. “The only safe dive is the one you don’t take. This is an entirely preventable catastrophe. Go into water feet first every time.”

Diving is the fourth leading cause of spinal cord injury for men and the fifth for women, according to the National Spinal Cord Injury Statistical Center. Teenagers are especially vulnerable. Surprisingly, one-third of diving injuries happen at the beach when someone runs into the water and dives headfirst into the waves.

Dr. Murray’s advice to go in feet first and, “break a leg, not your neck,” is at the heart of a successful diving injury prevention campaign in the state of Georgia. Over the past ten years, it has cut the number of spinal cord injuries in half.

When you dive, your body is like a torpedo. When you jump in, the body has a more stable Continue reading

Parents on Call – a reprint in honor of Father’s Day

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In honor of Father’s Day, we are proud to share the thoughtful, provocative and honest voice of Jeff Shannon. Jeff was a veteran writer on disability issues, who wrote frequently for our blog. He was also a C-5/6 quad, who was injured in 1979. He passed away in late 2013. Jeff was 52.

I’ll never forget the last time my father helped me. It was a typical situation, repeated dozens if not hundreds of times over the previous three decades: Something would go wrong in the afternoon or evening, and my mornings-only caregiver would be unavailable to return for off-hours assistance. Most of the time, my dad would be available, sometimes reluctantly, but available nonetheless. He was not the kind of guy who could easily say “no” to his children — especially to his youngest son who’d been paralyzed at the age of 17.

Continue reading

Jumping is Nice — But Think Twice

hometrampoline (3)As summer approaches, parents worry about trampoline injuries. Their worries are justified.

Trampoline use is a frequent cause of spinal cord injuries with two-thirds of injuries reported in children between the ages of 6, and 14 and 15% of injuries reported in children under the age of 6, according to the American Spinal Injury Association. In fact, the risk of injury is so high that the American Academy of Pediatrics (AAP) strongly discourages using trampolines at home. Continue reading