BLOG – Can an Unorthodox Operation Reverse Paraplegia?

"New Yorker" Magazine Focuses on the Story

Surgical recipient, Darek Fidyka Photo: Carla Van De Puttelaar for The New Yorker

“One Small Step,” in the January 25th issue of the ” New Yorker” magazine, focuses on the story of Darek Fidyka,  a 41-year-old Polish paraplegic, and a landmark operation that has enabled him to walk.  Fidyka, who was attacked with a knife in 2010 and is a T9 paraplegic, underwent an unorthodox operation In 2012 in which some of his own olfactory ensheathing cells, which run from the nose to the brain, were surgically removed and inserted into the damaged area of his spinal cord.  As a result of the operation and intense physical therapy, today he has sensation in his legs and is able to walk while wearing leg braces.

 

The surgery, which was performed by neurosurgeon Pawel Tabakow in Wroclaw, Poland, is a result of his collaboration with maverick English scientist Geoffrey Raisman of the Institute of Neurology at University College, London.   Raisman has been developing the idea of transplanting nerves from the nasal cavity, which have a unique ability to regenerate, into damaged spinal cords for more than 20 years. Fidyka is their first human subject.
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BLOG – New Beginning for Vets With ReWalk

The ReWalk system is a robotic exoskeleton that allows individuals with certain types of paralysis stand and walk. After a test involving 45 veterans, the Department of Veterans Affairs recently announced that it will pay for the FDA-approved robotic legs that could enable some veterans with spinal cord injuries to walk again. The ReWalk system is currently priced at about $77,000.

Of the approximately 42,000 veterans with paralysis, only a fraction would meet the requirement for an exoskeleton. The apparatus has specific height and weight requirements and is designed only for people with paraplegia, not quadriplegia. A supportive belt around the patient’s waist keeps the suit in place, and a backpack holds the computer and rechargeable battery. Crutches are used for stability, and the FDA requires that an assistant is nearby.

Gene Laureano, 53, is hoping his application for robotic legs will go through soon.

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Laureano and the ReWalk device with a caregiver

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BLOG – Video looks at College Life After SCI

A 12-minute video from Shepherd Center and Craig Hospital

A high-quality video featuring the stories of students with spinal cord injuries who are attending college has just been released by the Shepherd Center. The 12-minute program contains detailed accounts of young men and women — all with different levels of injury –figuring out how to navigate literally anything they want to achieve in a university setting.  The project took nearly a year to complete and was made possible with funding from the NCR Foundation and in conjunction with Ramp-Less-Traveled and Craig Hospital.

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Screenshot from the video

The video focuses on what it’s like to attend college or university after a spinal cord injury. One of the biggest hurdles is not knowing what college life will be like for someone in a wheelchair.  Once the decision to attend college is made, campus disability services personnel are available to help with the details.  Academic accessibility, such as note and test taking, and e-books, as well as environmental accessibility for classrooms, dorms, and on-campus transportation will all be coordinated through them.  The video shows students who are attending school after injury enjoying the many social aspects of college life – participating in sports, clubs, theater, Greek life, and hanging out with friends.

To see the video click here:

To read more about the personal experiences of students going to college with SCI, read our latest article in New Mobility magazine, Back To School: Stories of Success on Campus written by our Executive Producer, Stephanie D. Lollino.

BLOG – 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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BLOG – What SCI Family Caregivers Need to Know

It’s been one year since President Obama declared November National Family Caregivers Month to, “salute the people who care for their loved ones while protecting their dignity and individuality.”

Family.CaregiverWith a spinal cord injury (SCI), it’s often a family member who takes over the caregiving when a person leaves the hospital. It’s a big life-change for everyone. The individual is no longer a patient, yet often has urgent medical needs that are not going away any time soon — if ever. Life for the newly paralyzed person has changed so much that they need someone around who knows just as much about their heart as their injury. Sometimes, a family member is the only one who fits the bill.

SCI caregiving has difficulties of its own. And while they vary with the individual, here is a useful summary, put together by the National Caregivers Library, of the emotions commonly experienced after spinal cord injury:

 

  • Feelings of dependency may cause your loved one to withdraw; the idea of losing even the smallest bit of autonomy can be almost intolerable.
  • He or she may think they’ve become a burden to you and others. They may feel they’re pulling everybody down, and the family would be better off without them.
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BLOG – Trick or Treat — In a Wheelchair

Everybody loves Halloween and the idea of trick-or-treating – adults included. Children with spinal cord injuries can join in the fun and even incorporate their wheelchair into their costumes. Here are some special considerations:

For a kid that rolls, almost any costume can be made wheelchair-friendly. co. And they don’t have to be expensive to be fun.Screen Shot 2015-10-26 at 2.28.00 PM

Kids can opt to be anything from vampires to royalty. For your little princesses, a wheelchair can be made into a magic coach or fancy limousine. For those sporty ‘lil guys, a wheelchair can be a fast fantasy car or a speeding train engine.

A wheelchair makes a great accessory to a conductor’s costume or even an astronaut’s costume. There are no limits but your imagination. Continue reading

BLOG – Sex After Spinal Cord Injury

Extensive Online Resource Updated
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Dermatome map indicates the spinal nerves that control specific sensory areas

A recent update to Wikipedia’s entry on “Sexual Function After Spinal Cord Injury” has created a valuable online resource on the subject. The article is a collaboration of experts in the field of sexuality after SCI, and contains findings from clinical researchers and scholarly input from such sources as the Mayo Clinic and the Journal of Spinal Cord Medicine, Journal of Neurotrauma and Human Reproduction.

The easy-to-understand article begins by exploring how SCI impacts the quality of sexual function, and goes on to cover such subjects as how complete vs, incomplete injury affects sexual ability and satisfaction, how sensation and performance are Continue reading

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 pediatricians have experience in the care that children need.

Spinal Cord Injury in the Child and Young Adult covers the vast territory of pediatric SCI treatment 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.

Commentary:

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

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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