Support - not pity - needed

Double amputee Tony Christiansen is happy to offer support to quake victims. Photo / John Borren / File. Earthquake victims who have lost limbs from being cut from the rubble don't need pity, a double amputee says.

Tauranga City councillor Tony Christiansen lost his legs in a train shunting accident when he was nine.

Stories to emerge from Christchurch include a 52-year-old man whose legs were amputated with the tools available, a knife from a fold-out Leatherman multi-tool and a hacksaw, in order to save his life.

Mr Christiansen, who is travelling to America this week, said he would be happy to offer his support to amputees in Christchurch.

"If that opportunity comes up, I would be there in a flash because life's been very good to me.

"It's all I want to do in life is make difference.

"They don't need pity, they need strong people around them."

The double amputee said the adult victims of the Christchurch quake who had lost legs and arms had it worse than he did.

"I was pretty young, but I think for anybody later in life to have something like that happen is far more traumatic," Mr Christiansen said. "Being 9, I had only had a fairly [short] part of my life, and so carrying on the rest of it the way I am has been reasonably easy for me."

Mr Christiansen said people who had lost limbs in the earthquake would be traumatised.

"A lot of them probably wouldn't even know, even now, that they have lost their limb because they would be in an induced coma to help the body cope with the shock of what's happened.

"When reality hits, it's going to be probably one of the hardest things to ever imagine what it's like."

He said he could not say he knew how they felt, as everybody reacted differently.

"We all deal with things in different ways.

Some of us are more resilient to having changes and challenges in our lives."

Mr Christiansen, a motivational speaker, believed his attitude had got him through.

His achievements include climbing Africa's highest mountain, speeding 292km/h along Utah Bonneville Salt Flats in a Chevrolet V8 roadster, obtaining a pilot's licence, becoming a qualified lifeguard and writing two books.

His next goal is to compete at the 2014 Winter Paralympics in downhill slalom skiing.

"I know it's a tough thing to say but you have got to look at it [amputation] as an opportunity rather than a challenge," Mr Christiansen said.

"At the end of the day, your life's going to change in the blink of an eye.

"It's what you do about it that's going to make the difference."

USF researchers study amputee golfers to improve prosthetics

TAMPA — The hills and slopes of a Florida golf course may not look daunting to most, but to someone playing with a prosthetic leg, approaching the greens can seem a mighty trek.

"That's one of the biggest challenges they face," says Mike Rieth, a licensed prosthetist at St. Petersburg Limb and Brace. "It can be quite difficult walking up and down the little hills."

Still, he said, golf is the top sport among his clients, since it doesn't involve the pounding movements of other sports.

Now researchers at the University of South Florida want to help amputees get more out of the game. Scientists at the School of Physical Therapy and Rehabilitation Sciences invited a group of amputee golfers to Tampa Palms Country Club on Wednesday to find out if there was enough interest to pursue additional research in the field.

The answer was a clear yes.

Golfers received coaching from pros and tips from prosthetics researchers to improve their game and make better use of their prostheses.

Researchers from USF's School of Physical Therapy and Rehabilitation watched golf swings and listened in on conversations to learn of new challenges to study.

Rudy Salas, a Marine veteran who lost a leg below the knee when he stepped on a mine in Vietnam in 1967, has been playing golf for about three years. Salas, 64, is president of the Amputee Veterans of America Support Team at James A. Haley VA Medical Center in Tampa, and brought several buddies to the course Wednesday.

"The real benefit is that we get the prosthetic people paying attention to how we play the game," he said. That knowledge, he hopes, will lead to better prosthetic devices for all amputees.

USF's is among the leading centers for prosthetic research in the country, not only conducting research, but also fitting patients with prosthetic devices. Jason Highsmith, a physical therapist and researcher, says the center studies new devices and what's on the market to make sure that what works in the lab works in real life. The goal is "to come up with the best device for all activities of daily living and recreation," he said.

Highsmith's colleague Jason Kahle said it was useful, for instance, to learn that some above-the-knee amputees had a hard time locking their artificial knees so they can transfer their body weight while swinging a golf club.

"What if I could change a computer program for a microprocessor knee so the knee would lock only while playing golf? That would be something worth researching," Kahle said.

"We're always gathering ideas for the next venture. What do we need to look at next?"

James Bond, 53, of St. Augustine, was riding a motorcycle when he was hit by a drunken driver in 1987 and lost a leg above the knee. He has been golfing for four years.

His prosthesis swivels in the ankle, giving him good range of motion. But like many amputees, he hesitates to really test the limits of the device.

The USF experts, he said, "will get us to use the prosthesis to its full potential.''

Irene Maher can be reached at imaher@sptimes.com.

New robotic foot could change lives of amputees

Christi Myers
More: Bio, Facebook, News Team
HOUSTON (KTRK) -- The wars in Afghanistan and Iraq have left many young soldiers and marines with injured limbs that had to be amputated. For years, government researchers worked to develop a better prosthetic foot. And it's paid off.

One of the first people in the country to get the new robotic foot is a special forces veteran in Houston.

Randy Tipton is an amputee who is limited by his prosthetic left foot. Now, he is one of only a dozen people in the US to get a robotic foot that is programmed with a cell phone!

The Powerfoot BiOM is a bionic foot & leg that replaces the Achilles tendon and calf muscle.

"The other one feels like I'm dragging it along. This one is actually pushing me along, so it works just like my other foot. It's excellent," Tipton said.

This is a robotic foot that for all practical purposes can almost "think." And the funding over a four-year period was by the departments of defense and veterans affairs.

Initially for veterans or those with combat injuries, it will soon be available for everyone. It's sophisticated, but also user-friendly

In minutes, Tipton was programming it himself.

"This foot happens to be a quantum leap from all other feet. It is significantly, significantly different," Dr. Mark Beveniste, a prosthetist with the DeBakey VA, said.

Tipton, who did four tours in Afghanistan and Iraq with the Special Forces, lost his foot back home, when a distracted driver hit his motorcycle. Now he is training to become a prosthetist and help others.

"I understand the challenges probably better than anybody other than other amputees," Tipton said.

Stairs are no longer a problem; he tested it on a hill outside, easily walking up and down it.

"Very cool, it's gonna help a lot of people," Tipton said.

The DeBakey VA Hospital is the fourth place to have the robotic foot, besides Brooke Army Medical Center in San Antonio and two other military hospitals. But the company plans to make it available to civilians beginning in April.

From tragedy, transformation

By Sarah Linn | slinn@thetribunenews.com

Pismo Beach author Wendelin Van Draanen's latest tale - of a young track store who loses her leg - explores the inspirational world of amputee athletes

Reading “The Running Dream,” the latest book by Pismo Beach author Wendelin Van Draanen, had a profound effect on 15-year-old Mandy Birkolz.

“When my daughter read the book, she started identifying with me in a new way,” said Mandy’s father, Greg Birkholz, who lost his leg in a motorcycle accident in 2000. “I had shared (my experiences) with my daughter, but for her to read it in the book and for her to look through it as the eyes of (the main character)… it suddenly made sense.”

“The Running Dream”By Wendelin Van Draanen, Knopf Books for Young Readers, $17

Wendelin Van Draanen will sign copies of “The Running Dream” on Saturday, Feb. 19, at Barnes & Noble, 894 Marsh St. in San Luis Obispo. The free book signing starts at 2 p.m.

“The Running Dream” offers an in-depth look at the world of amputee athletes, delving into one runner’s physical and emotional recovery from a life-shattering accident.

The book, published in January by Knopf Books for Young Readers, has already won accolades from former Mission Prep track star Jordan Hasay and “E.R.” actor Anthony Edwards.

“Once I started reading ‘The Running Dream,’ I could not put it down,” said Hasay, now a sophomore studying physiology at the University of Oregon. “Wendelin … really was able to capture the passion and love for the sport that myself and all runners share.”

With its serious subject matter and gritty details, “The Running Dream” is a departure of sorts for Van Draanen, the award-winning author of the Sammy Keyes mysteries, the Shredderman books and other young adult novels. She’s also written a handful of stand-alone titles, including “Confessions of a Serial Kisser” and “Flipped,” which was recently made into a movie.

“I battled with myself about writing this book,” said Van Draanen, who worked on “The Running Dream” for about three years. “There was so much about the subject matter that I had no knowledge base for.”

Nonetheless, she said, “Jessica just kind of took root in my brain.”

Jessica Carlisle, the 16-year-old protagonist of “The Running Dream,” loses her right leg below the knee in a tragic bus accident. The teenage track star initially gives up hope of ever running again, but her steadfast friends and loving family help her get back on her feet.

According to Van Draanen, the seed for “The Running Dream” was planted when she and husband Mark Parsons ran the New York City Marathon in November 2007.

As they reached the 12-mile mark, the pair came upon a sighted runner tethered to his blind friend.

“I can’t even make it across my room with my eyes closed,” Van Draanen said. “How do you make it 26.5 miles on a crowded race (route) with hundreds of other people?”

A sprinter during her time at Cabrillo High School in Lompoc, she typically heads out for a run four days a week, covering five or six miles in a stretch. Over the course of five marathons, she’s encountered “very inspirational people” at every mobility level – including those who use prosthetic limbs and wheelchairs.

“Here you’ve got two legs and it’s the toughest thing you’ve done,” Van Draanen said. “You realize that your tough is nothing like their tough.” In order to accurately capture the amputee experience, Van Draanen sought help from the likes of Arroyo Grande prosthetics expert John D. Hollingsead, Santa Maria track coach Greg Sarkisian, and Dana Cummings, executive director of the Association of Amputee Surfers in San Luis Obispo. She even followed AmpSurf co-founder Greg Birkholz through the process of getting a new leg.

“Every appointment I had for the making of that leg, from when the socket was fitted to the final prosthetic, she was there,” said Birkholz, who works as a substitute teacher in Santa Margarita. “It gave a new appreciation for an author like Wendelin who really does her homework first. If she didn’t have it right, she wanted it right.”

As the executive director of the World Hope Foundation, a non-profit organization with operations in Ghana, India and Nigeria, Birkholz has helped fellow amputees walk again.

Getting a prosthetic limb “changes their life dramatically,” Birkholz said. “They become independent.”

Although Americans’ attitude toward amputees has improved, due in part to increasing numbers of soldiers returning home with damaged or missing limbs, Birkholz said he and his peers still face a certain stigma.

“It’s so easy to overlook people who are different than we are. It’s so much easier not to interface or engage,” Van Draanen said. “Part of writing this story for me was breaking down the fear and realizing that behind the disability there’s a person.”

That point is driven home in “The Running Dream” by Jessica’s friendship with Rosa Brazzi, an intelligent young woman with cerebral palsy. (The character was inspired in part by Pismo Beach pilot and activist Adele Schneidereit, who has cerebral palsy, Van Draanen said.)

As Jessica tells a news anchor, the goal is “to have people see her instead of her condition. That’s all anybody with a disability wants.”

Ultimately, “The Running Dream” is a story about hope and the indomitable human spirit, Van Draanen said.

“The message of making it through your darkest hour and finding there is life after that is something that everybody can relate to,” she said.

20,000 people expected at Walk to Cure Diabetes Feb. 26

Posted by Doug Stone

Last update: February 9, 2011 - 9:04 PM

It’s less than a month until our favorite walk of the year: The Walk to Cure Diabetes at 8 a.m. Saturday, Feb. 26, at the Mall of America, sponsored by the Juvenile Diabetes Research Foundation (JDRF).

When we first started going to the walk years ago, one of our kids was in a stroller and the other wasn’t here yet. They are now 15 and nearly 13 and they’ve become big organizers, bringing their friends along, designing t-shirts and helping to raise money.

Our children, Sadie and Evie, love the excitement of the 20,000 walkers, the bands, jugglers and all the activity. But they also participate because their mother and my wife, Ann, was diagnosed with Type I (insulin dependent) diabetes in 1984, just as she was finishing graduate school. Despite the many complications of diabetes, she was able to travel first to China to get Sadie and then to Vietnam to get Evie to make our family. The girls have never known her without serious health issues resulting from diabetes including heart problems, neuropathy or lack of feeling in her legs, a deteriorating ankle and kidney failure, to name a few.

In 2001 she had a kidney transplant (generously donated by a loving older sister) and a few weeks later a pancreas transplant (donated anonymously by someone who had died). Miraculously, she now has normal kidney function and her pancreas produces insulin so she no longer needs to take four shots a day. The transplants stabilized her condition, but she continues to suffer from many complications and takes two dozen pills a day.

Ann can still walk on her own, but for big outings she needs to use a wheelchair. This year for the first time she will use her new electric scooter, which gives her the mobility and independence to zoom around the mall with the rest of the walkers. The kids are very proud of the scooter and their mom’s driving.

Participating in the walk is our way to show solidarity and common bond with the millions of people who suffer from diabetes and its ravaging long-term complications. As many as three million people, many of them children, have Type 1 diabetes in which the pancreas stops producing insulin, a hormone that enables people to get energy from food. Another 20 million, mostly adults but an increasing number of children, have Type 2, a metabolic disorder in which a person’s body still produces insulin but is unable to use it effectively.

The disease is a major contributor to kidney failure, heart attacks, nerve damage, strokes and blindness and it’s estimated that diabetes accounts for more than $170 billion in health care costs annually.

The organizers of the walk this year hope to raise more than $2 million for critical research, much of it done at the University of Minnesota.

We know what diabetes has done to our family. When we see the hundreds of young kids at the walk who suffer from this disease, we can only imagine what their families face in the years ahead. That is why the walk is so important. It is about taking a concrete step towards curing this dreaded affliction through research. And, just as important, it is about providing hope for those kids and their families, hope that some day they won’t have to take four shots a day, or check their blood sugars constantly, or suffer insulin reactions or face the prospect of losing their kidney function or their eyesight. Hope that some day they can live lives just like their friends who joined them on the walk.

Given all that, we never mind prodding and cajoling our friends and families to contribute or participate. It’s a great cause.

If you want to support the walk or participate or learn more, go to: www.walk.jdrf.org

Amputee's Inspirational Journey to Run Again

By Kyla Igoe
Bio | Email

February 4, 2011

Updated Feb 4, 2011 at 6:21 PM EST

show:6pm

Kenmore, NY (WKBW) - West Seneca native Kevin Degnan has always had a passion for running. In college he was a competitive athlete for Canisius College's track team and ran about 60-80 miles a week. In 1986 though, Degnan was hit by a car while jogging and the accident left his left leg severely injured. After many surgeries, years of rehabilitation, and infections Degnan and his doctor decided to amputate his leg. He underwent surgery in September of 2010.

"Right from the start, I looked at things moving forward, take like as it is, and make it better," said Degnan.

Following his surgery, Degnan was determined to run again and in November, just months after his surgery he did just that. Now, Degnan can run for miles and thanks his recovery to AthletiCare at Kenmore Mercy Hospital and Tonawanda Limb & Brace who fitted him for his prosthesic. He also thanks his family, friends, children for their support and now wants to help others recover.

"If I can help someone else by doing what I love to do, that's a great thing," added Degnan. "Why should we say the sky is the limit when there is no limit? That's how I feel, there are no limits."

Degnan's goal now is to participate in the Shoes for the Shelter 5K Run in April.

The FDA announced a priority review program for devices designed to speed technological innovation.

The agency's Innovation Pathway program, which echoes the National Institutes of Health's drug development initiative announced last month, will feature as its pilot candidate a brain-controlled prosthetic arm that would allow amputees “almost lifelike movement,” including a thumb.

The arm was developed by the Defense Advanced Research Projects Agency (DARPA) to treat battlefield injuries. It uses a microchip implanted on the surface of the brain to translate neural activity into movement. It fits the parameters of the Innovation Pathway program, which calls for “truly pioneering technologies with the potential of revolutionizing patient care.”

Experimental devices included in the program, to be run through the Center for Devices and Radiological Health, would receive a proposed roadmap and timeline for device development, clinical assessment and regulatory review, and would be assigned a case manager. Key scientific issues could be identified earlier in the process, the agency said, and candidates could qualify for flexible clinical trial protocols. Premarket reviews of products in the Pathway would take no more than 150 days – nearly half the time it currently takes the agency to conduct normal reviews.

The agency will seek public input before further implementing the Pathway program, which would also:

Establish a voluntary, third-party certification program for US medical device test centers aimed at promoting rapid improvements to technologies in the development and clinical testing phases;
Create a publicly-available core curriculum for device development and testing to train the next generation of innovators
Use more device experience and data collected outside the US

CDRH also plans to engage in “formal horizon scanning,” monitoring medical literature and scientific funding to determine where technology is heading.

It's the latest indication of the Obama administration's concern that the US is losing its edge in medical technology. In remarks announcing the program, FDA Commissioner Margaret Hamburg said she hoped the program would serve as a “catalyst for innovation.”

CDRH will host a public meeting on the Innovation Pathway initiative March 15 at its White Oak, MD campus.