April 2012

With Locomotor Training, Paralyzed Man Walks Again and Helps Others

Janne Kouri Walks Again After Spinal Cord Injury

Janne Kouri of Hermosa Beach, California was told there was no hope for recovery from his freak accident. With the support of his girlfriend (now wife) Susan and a lot of determination, however, Kouri has turned the diagnosis that changed his life into his life’s work.

On August 5th, 2006, Kouri was playing beach volleyball with friends. He took a quick jog to the shore to cool off, and as he dove into the waves his head struck a hidden sandbar. Kouri was instantly paralyzed from the waist down.

“I knew something really bad had happened because I couldn’t move anything,” said Kouri, “There definitely was — a moment there where I was thinking that that could be my last breath.”

An off duty EMT pulled him from the waves and rushed him to the hospital, where Susan, was given the devastating news. The diagnosis was grim. Kouri had fractured his spine in two places, and treatment options were not plentiful.

Janne and Susan Kouri

“The doctor looked me right in the eye and said, ‘You need to be prepared for him never to walk again,'” Susan recalled. “I will never forget that.”

The couple wouldn’t give up, however, and Susan traveled the country to visit treatment centers until they found Dr. Susan Harkema at the Frazier Rehabilitation Institute in Louisville, Kentucky. Harkema was best known for her work with a new therapy called “loco-motor training,” that the late actor Christopher Reeve helped test. The therapy teaches the spinal cord how to control motor functions such as walking by repeating the motions.

The couple moved to Louisville and Kouri began treatment under Harkema’s care.

Janne Kouri undergoing locomotor training to improve mobility

“The first day I got there they put me up on the treadmill and I passed out in seven seconds. Shortly after, within days after, I was able to stay up for ten, 15 minutes, and then an hour,” Kouri said. “Very quickly I started to get a lot stronger. My circulation improved, blood pressure improved, muscle strength.”

The treatment was challenging, but after just three months Kouri was able to move a toe, and that was only the beginning. Little by little, Kouri was able to get up and move about with the help of a walker, and finally able to stand on his own for short periods of time. That wasn’t enough for Kouri, who surprised his wife with the slow dance they missed after exchanging vows.

“You hear it all the time, but if you put your mind to it, you can make it happen. But you know it’s true that if you stay focused and work every single day, you really can do whatever you set your mind to,” he said.

Janne Kouri and Next Step Fitness Spinal Cord Injury Rehab

Kouri set his mind to more than just his own recovery. When the couple wanted to move back home to California, they found that there was no place they could go to continue the therapy that was helping him, which also meant that no one else in the area could benefit from the treatment. So with the help of the Christopher and Dana Reeve Foundation, Kouri has helped launch Next Step Fitness, a non-profit rehab center that allows others to receive the same therapy option at an affordable cost.

To learn more about Kouri’s loco-motor training and Next Step Fitness rehabilitation center, please visit nextstepfitness.org.


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Could Progesterone Speed Recovery from Traumatic Brain Injury?

scene at the Sugarland stage collapse

Many of us remember hearing about the tragic collapse of stage rigging at the Indiana State Fair last August that left seven people dead and over 40 injured. Andrea Vellinga was one of those victims. This wife and mother from Pendleton, Indiana suffered a major traumatic brain injury (TBI) when her skull was crushed in the collapse. After weeks in a coma, where she relied on a ventilator to help her breathe, it seemed unlikely that Vellinga would return to the same mobility as she had prior to the accident. But a clinical trial using progesterone may be the reason Vellinga is walking today.

Andrea Vellinga and neurologist Michael Turner MD

“Let me see you walk,” says Dr. Michael Turner, a neurosurgeon at Goodman Campbell Brain and Spine in Indianapolis.

With a huge smile, the 30-year-old Vellinga slips off a helmet she wears to protect her skull, slides off the exam table, and walks across the room. She even walks on her toes, like a ballerina, when requested to do so.

Indiana State Fair Collapse Andrea Vellinga TBI Recovery

Dr. Turner sums up her progress in one word: Awesome.

It’s possible her amazing progress is due to a quick decision made by Vellinga’s family just hours after the injury occurred. They enrolled her in a cutting-edge experimental trial called SyNAPSe. The trial uses the pregnancy hormone progesterone, which is known to help reduce swelling and improve memory in people who have suffered traumatic brain injuries.

Andrea in the hospital after traumatic brain injury

While it is possible that Vellinga could have received a placebo, doctors hope that her progress is linked to the drug. If so, it’s possible that progesterone could hold the key to a more successful recovery for the millions that suffer TBIs. Traumatic brain injuries are notoriously difficult to treat.

Despite the medication, Vellinga credits her family, especially daughter Lydia, for giving her the willpower to recover. “She is so cute. She holds my hand when we walk. She says, ‘Mommy, I don’t want you to fall and hit your head again,'” Vellinga said. “She always says, ‘Mommy, no more concerts, indoors or outdoors.'”

Andea Vellinga recovering with help from her daughter

While she may not be planning any concert-going in the near future, Vellinga will be returning home in May, just in time for her 31st birthday.


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Quadriplegic Man Sails the Atlantic, Has Local Train Deny His Wheelchair

powerchair user, sailor and MBE Geoff Holt

In 2007, he was the first person in a wheelchair to circumnavigate Great Britain. In 2010, he was the first quadriplegic to sail 2,700 miles solo across the Atlantic. In 2012, however, Geoff Holt was told that he was not permitted to board a passenger train to make a three minute trip–because he was using a powerchair.

Earlier that morning, Holt boarded the train on Britain’s Isle of Wight for the short commute from Ryde Pier to Ryde Esplanade. When he attempted to board the same train nine hours later to return, an unnamed guard stopped him and told him he was not allowed on board.

isle of wight train line - is it accessible for the disabled?

When he asked “Why?” Holt was surprised by the guard’s explanation: “Those things,” said the guard, pointing at the powerchair, “aren’t allowed on the trains. They will damage the floors.”

When Holt attempted to explain that he had made the same journey just nine hours earlier, the guard stated, “Rubbish, you would not have been allowed to board the train.”

Geoff Holt sailor, MBE and wheelchair user

To add injury to insult, the guard eventually lifted a ramp stored on the train and threw it on the platform, allowing Holt to board, but cutting his foot and leg in the process. Sadly, none of the other passengers assisted Holt during the argument, or after his injury.

Holt, who was made a Member of the Most Excellent Order of the British Empire (MBE) in 2010, said of his experience with the transport guard, “He had publicly humiliated me, he had publicly degraded me and he had made me feel like a worthless piece of dirt… it was quite simply the most disgusting way to treat another human being, let alone a disabled one.”

wheelchair user and sailor Geoff Holt

Senior management of the Island Line has contacted Holt to apologize, and the British Transport Police are investigating the situation. The guard has been suspended pending the results of the investigation.


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Veterans and Wolves Combating Post Traumatic Stress Disorder Together

warriors and wolves program for veterans

Several months ago, Lockwood Animal Rescue Center in Frazier Park, California rescued 29 wolf-dog hybrids from a tourist attraction in Alaska. The dogs, which resemble full-blooded wolves in appearance and demeanor, arrived with chains embedded into the skin of their necks. They had been chained so that tourists could pose for photographs with them. The wolves have joined a dozen already at the rescue center and have begun to form into small packs.

The animal rescue center caring for the wolves was started in 2008 by Lorin Lindner and her husband, Matthew Simmons. Lindner is a clinical psychologist who has worked with homeless and addicted veterans and Simmons is himself a Navy vet. They were uniquely suited to run the Warriors and Wolves program at Lockwood, helping to heal the hearts and souls of both man and beast.

Lorin Lindner, one of the founders, and a wolf buddy

Like the veterans that are rehabilitating the wolves, the animals suffer from post traumatic stress disorder that is caused by living in an unnatural and stressful environment. When the wolves arrived at the rescue center and were turned loose to run, they developed lameness and hip problems because they had never been permitted to use their muscles. They now sleep on soft-webbed trundle beds to ease joint pain, and are fed high quality kibble made of buffalo, venison, and game birds, along with five to ten pounds of meat a day.

William Varley, a volunteer at Lockwood, sees the similarity between where the wolves and veterans have been. “A great number of people are coming back from a combat environment and that’s as stressful as can be. It’s difficult to transition from that to civilian life.” The Warriors and Wolves Project offers veterans an opportunity to develop a sense of trust and confidence by caring for the wolves, as well as provides addiction counseling and therapy.

veteran and wolf in the program warriors and wolves

Stanley McDonald, one of three veterans currently in the program, knows firsthand what caring for the wolves can accomplish. McDonald has battled alcoholism and the effects of post war PTSD after serving ten years in the Navy.

One of the wolf dogs being rehabilitated in the program

“I get along with the wolves,” says McDonald. “They’ve been in a bad situation, which I’ve been in most of my life. Most of them are afraid, taken away from the only thing they knew.” McDonald has seen improvements in his own life since he started caring for the wolves. He says he realized that if he could help them, he could help himself also. “I made a wonderful change,” said McDonald. “I’m back with my family doing things I love to do.”



Geron Abandons Stem Cell Paralysis Cure, but the Miami Project Carries On

Miami Project Stem Cell Researchers

The poor economy was the reason cited when Geron decided to abandon its research into stem cell cures for paralysis. The company was conducting its first ever clinical trial on humans after investing millions of dollars, when it essentially walked away from years of research that many felt was closing in on a cure. It was a reminder of how long the road ahead in stem cell research really is.

Explained Ben Sykes, executive director of the UK National Stem Cell Network, “It is important to remember that the development of stem cell-based therapies is still in its early stages and, under difficult economic circumstances, companies are occasionally forced to prioritize other therapies which are more developed.”

Miami Project Stem Cell Researcher Mary Bunge

Fortunately, the field is still open for other scientists, like those at The Miami Project to Cure Paralysis. The Miami Project was co-founded by neurosurgeon Barth Green and football Hall of Famer Nick Buoniconti. In 1985, Buoniconti’s son suffered a spinal cord injury during a college football game. Marc Buoniconti is currently president of the Miami Project, which has raised millions of dollars over the past 26 years to fund research on brain and spinal cord injuries.

The Miami Project to Cure Paralysis logo

The Miami Project is hoping for U.S. Food and Drug Administration approval to conduct human clinical trials of a therapy for those with spinal cord injuries. Scientists have repaired spinal injuries in lab animals by injecting their Schwann cells into the site of the injury. According to Dr. W. Dalton Dietrich, the scientific director of The Miami Project, “Animal models have shown that Schwann cells can improve function in walking, the ability to use upper extremities, and increase strength. These are quality-of-life issues.”

Miami Project Stem Cell Researcher Dalton Dietrich

Schwann cells wrap around nerves cells and by reinsulating damaged cells can restore some function to them. Unlike embryonic stem cells, which can be difficult to control and can lead to tumor growth, initial tests using Schwann cells have found no evidence of tumor formation. While the therapy is not likely to return patients to pre-injury movement, scientists hope to bring quality of life improvements to patients.

Paralysis Cures Schwann Cell diagram

The group is currently seeking FDA approval to begin clinical trials on human patients. They will be using a small group of patients with recent spinal cord injuries in the first trial.


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Inspiring Paralyzed Painter Creates Artworks with His Mouth

Paralyzed Artist Kenzi Robi Selling His Paintings

A staple of the Fisherman’s Wharf scene, Kenzi Robi can be seen most days, sitting in his wheelchair, with his fiancée beside him, creating beautiful artwork admired by passing tourists. Robi paints with a brush that he holds in his mouth, and is quite happy to be a “Human Xerox machine,” producing works of art for tourists that visit the area. He never gave up on the American Dream and helps counsel and mentor others with severe disabilities.

Quadriplegic Painter Kenzi Robi with His Fiancee

It wasn’t always like that for Robi. At age 19, he was the father of a 3-month-old baby boy and on the wrong track. He was “running the streets,” destined for a future behind bars. The lifestyle Robi had at the time ultimately changed his life for the better. Though he cannot remember what the fight was about, in 1992 Robi was struck by a bullet in the neck. He woke up from a coma at St. Mary’s Medical Center to be informed by doctors that he was quadriplegic, and would never walk again.

Paralyzed Artist Kenzi Robi Accepts American Dream Award

“It was the end of the world,” Robi says from his apartment in Fisherman’s Wharf. “I wanted to click game over, reset.”

The initial shock of his health status was devastating, but Robi is naturally an optimist and found a way to overcome the mental hurdle of having his future altered. He returned to his first love, art.

Quadriplegic Artist Kenzi Robi Paints on Fishermans Wharf

“In a way, being shot helped me,” Robi says. “It struck me down and helped me realize what is important – and that’s what’s on the inside.”

Quadriplegic Kenzi Robi Still Paints with His Mouth

Although his hands would never hold a pencil or paintbrush again, the nurses and staff at St. Mary’s encouraged him to not turn his back on his passion. Using a mouth stick enabled Robi to continue to paint. At first he worried that the quality of his work would be inferior. Eventually, his creativity won over his misgivings, and he began to perfect the art of painting without using his hands.

Quadriplegic Kenzi Robi Uses Mouth Trays to Paint

Robi finds solace in his artwork. Life slows down as he gets into the zone of painting. He doesn’t need to think about the fact he requires three caregivers around the clock to assist him with daily activities. Inspired by Van Gogh and Chagall, the paintings take life, full of colors and symbolism.

“I don’t want the disability to show, especially with my art,” he says. “I want it to stand on its own without me 500 years from now.”

Paralyzed Artist Kenzi Robi Painting with His Mouth

Robi is an inspiration to many, and not simply because of his artistic talent. He volunteers as a mentor to severely disabled patients at Laguna Honda Hospital, where he helps the patients prepare for the emotional challenges of life after discharge.

Paralyzed Artist Kenzi Robi Painting with His Mouth on Fishermans Wharf

“Things might seem bad, and they might be bad. But it gets better. Even when the pain gets bad, continue doing your best no matter what you might think. However insignificant (your passion), it doesn’t matter as long as you keep trying.”

Robi’s optimism has paid off. In addition to pursuing his artistic calling, Robi is engaged to be married to his former caretaker, and as always, is optimistic about the future.


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Exciting Upsets in This Year’s Boston Marathon Wheelchair Races

Boston Marathon Wheelchair Race Men

The weather was unseasonably warm for this week’s Boston Marathon and pundits predicted that competitors would have a hard time of it. That came as news to wheelchair racers in the Push Rims Division, especially Canada’s Joshua Cassidy, who set a new record while winning the Men’s Division.

Boston Marathon Joshua Cassidy Breaks Mens Wheelchair Record

Going into the race, Cassidy was not concerned with breaking any record. He was more focused on keeping ahead of South African Ernst Van Dyk, the nine-time marathon winner. Cassidy ended up breaking Van Dyk’s 2004 record by two seconds, with a finish time of one hour, 18 minutes and 25 seconds.

Boston Marathon Joshua Cassidy Breaks Mens Wheelchair Record - winners circle

Cassidy won the race despite wearing the long-sleeved compression jersey he was used to training in. He explained to the Associated Press, “I wanted to stick with what was familiar and not worry about the heat.”  But ultimately shattering the record hinged on his ability to adapt to changes during the race.

He explained what was going through his head at the time, “I was keeping time and knew there was a chance [at the record], so I kept pushing for it. I’m pretty excited, pretty happy. … With more experience, I think you have less of a game plan and you’re able to react a little better. I was going into it looking to stick with Ernst and if I was on my own, I was just going to keep my head down, work hard, and focus on my own strengths.”

Boston Marathon Shirley Reilly Women's Wheelchair Winner

In the Women’s Division, Shirley Reilly of the United States also beat out a formidable competitor, Wakako Tsuchida of Japan. Tuschida, a five time marathon winner, was one second behind Reilly, who finished at one hour, 37 minutes and 36 seconds.

Boston Marathon Shirley Reilly Women's Wheelchair Winner - winners circle

Said Reilly of her win, and next week’s London Marathon, “I’ve never done it before, but I’m really excited to do it and I’m excited to race these girls again…. Today just happened to be my day. I’m very fortunate to beat these girls. I’m very honored.”


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Journalist Turns Painter After Traumatic Brain Injury

Artist and TBI survivor Elliette Markhbein, at work

Eliette Markhbein was a young journalist with a bright future when she was struck by a speeding car while biking in 2004. The accident split her helmet in half “like a ripe watermelon” and left her with serious injuries to her brain and spinal cord. While struggling to recover from the collision, Markhbein began painting, which she found took her mind off of the physical and emotional devastation she was facing. “When I was painting I did not have to face my injury. It was addictive. It was better than morphine,” she said.

Markhbein portait of TBI survivor Claudia Carreon

Eventually, Markhbein returned to college to study painting. Her work on a self-portrait led her to a project depicting the faces of others with traumatic brain injuries. Her subjects include Congresswoman Gabrielle Giffords, the victim of a Tucson shooting in 2011; journalist Bob Woodruff, wounded by a roadside bomb in Iraq in 2006; Trisha Meili, the “Central Park Jogger” assaulted in 1989; and Claudia Carreon, an Army veteran injured in a head on collision in Iraq in 2003. Even actor George Clooney, who sustained a brain injury while filming in 2005, is included in her portraits.

Markhbein portrait of TBI survivor Alexis Verrzal

Markhbein creates each painting using a series of steps that themselves resemble TBI. She draws each portrait on paper, then cuts it into irregular squares, which are then reassembled into paintings on canvas. The effect is one of an interrupted, slightly dislocated portrait, that one cannot help but try to reassemble in the mind’s eye.

Markhbein portrait of TBI survivor Trisha Meili

Markhbein’s paintings were recently on display with The TBI Project, which is sponsored by the Brain Injury Association of America and the Society of Arts in Healthcare. Eventually, the pieces will be auctioned to help fund the Artists in Residence program, which will help people with TBIs in hospital and rehabilitation settings.


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Therapy Helps Paralyzed Dog Walk Again

Sammi receiving rehabilitation on a ball

In 2008, Sammi, an eight-year-old Springer Spaniel, was in serious trouble. Surgery was unable to remove a bone pressing into his spinal cord, leaving him with quadriplegia. With help from a group of devoted and dedicated animal therapists, however, Sammi learned to walk again.

It was an intensive physical therapy regime at California Animal Rehabilitation in Santa Monica that taught Sammi how to walk. During an initial evaluation in March of 2008, physiotherapists tried to help him move by hoisting him between two large loops of fabric. Despite their best efforts, he was still he was unable to walk.

However, after extensive rehabilitative therapy, Sammi started showing signs of progress. It began with the use of his front legs. After some practice, and with the added enticements of praise and treats from his trainer, Sammi was able to push himself up into a sitting position.

Sammi the paralyzed dog walks again after therapy

His physical therapies included the use of therapy balls, much like they would in human therapy. Therapists would roll him along with the ball beneath his mid-section. They would also use other animals as models for walking, allowing Sammi to play and cuddle with the other animals, including a small kitten.

Sammi the quadriplegic dog walks again after therapy

Eventually, Sammi moved to using a canine wheelchair. This tool essentially allowed him to exercise and use his limbs without imposing the full weight of his body on them. With a lot of effort (and the promise of more treats) he was able to push himself along for short bursts. Shortly after, he began assisted walking, with a trainer holding him up instead of a wheelchair.

Sammi the dog with paralysis walks again after therapy

By the end of 2008, Sammi had regained the use of his limbs. In a teary-eyed reunion with his owner, he ran to her and sat her feet, wagging his tail furiously. He has since gone on to live a life full of running and jumping and even taking the occasional lap around the swimming pool on a hot summer day!



Innovative Surgeon Provides Mobility to Thousands with Cerebral Palsy

Lily with her mother before her surgery

Lily Gordon wanted what many 6-year-old girls want–to wear sparkly princess shoes and to take dance classes–but cerebral palsy made her dreams seem impossible. Although her family lives in the United Kingdom, her parents elected to bring her to St. Louis to undergo a specialized surgery called selective dorsal rhizotomy that was perfected there by Dr. T. S. Park. They are one of many families that have traveled from all over the United States and from over forty countries to be treated by Dr. Park.

Dr Park with a patient

Cerebral palsy causes a loss of motor control and balance, and persistent muscle tightness that often leaves patients requiring a wheelchair for daily activities. During selective dorsal rhizotomy surgery, a small piece of bone from a single vertebra is removed to expose the spinal cord. Sensory nerves are isolated from the motor nerves and checked for their effect on spasticity using electrical and mechanical stimuli. Dr. Park cuts the abnormal sensory nerves, reducing or even eliminating, muscle spasticity. The surgery lasts a lifetime, and enables many CP patients to walk unaided.

Selective dorsal rhizotomy surgeries have been performed since the 1980’s, but Dr. Park, who has been performing this operation for 23 years, has perfected the procedure. He is the Shi H. Huang Professor of Neurological Surgery at the School of Medicine and the neurosurgeon-in-chief at the St. Louis Children’s Hospital. He refined the surgery to require that only a tiny portion of the spine (about a square inch) be  opened. At first the medical community was skeptical of the procedure; time, as well as a 100% success rate in over 2,000 surgeries, eventually validated the technique. Dr. Park hopes that the procedure becomes mainstream and has trained other doctors from around the world on the technique.

faces of hope poster of patients who have had sdr surgery

But it was a Facebook group for the practice that garnered him the worldwide attention of cerebral palsy patients like the Gordons. Because the surgery is still considered experimental by many insurance companies, Lily’s family had to raise nearly $65,000 to pay for the operation and travel.

After months of fundraising, Joanne and husband David flew their daughter to St. Louis for the procedure. Now Lily is home and continuing physical therapy to strengthen her legs. She is walking and has even joined a theatre group where she is learning some dance steps. Lily has replaced her cumbersome leg splints with small ankle splints, allowing her to wear her sparkly princess shoes at last!

Dr. T. S. Park's Selective Dorsal Rhizotomy Patient, Lily Gordon

“It’s hard to believe it is 12 months later and it is all over and on her way to recovery. We are so glad we did it,” says her mother Joanne Gordon.

The family has donated the remainder of funds for Lily’s surgery to three other families who are hoping to travel to Dr. Park soon. And the surgeon himself recently visited the U.K. and was feted by more than 90 families and their children, whose lives he has transformed.


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