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Prepared at the Highest Level

David Ellis remembers his very first days at Shepherd Center, including the visit of a fellow patient, J.D. Frazier, who came “roaring into the room” in his wheelchair, spinning around wildly.

“My family said, ‘One day, you’ll be like that,’” David recalls. “I just replied, ‘Yeah, right.’”

David, who sustained a C-3 to C-4 complete spinal cord injury in 1997 when a truck rolled over him, had led an active life as an investment banker, traveling all over the world. His accident left him paralyzed below the neck and dependent on a ventilator to help him breathe. And he couldn’t imagine his quality of life going forward.

After five months at Shepherd Center, he was able to return home and four months later was weaned off the ventilator. He eventually returned to his job and has adjusted to a “new normal.” He even volunteers extensively at Shepherd Center, sharing his story to those who are newly injured (see sidebar).

David’s story is similar to that of so many others treated at Shepherd Center for high-level (C-1 to C-5) quadriplegia, the loss of movement below the neck and shoulders. It’s similar in that early despair often gives way to successful adjustment to a new way of living – and sometimes even moving into the role of peer supporter to help other patients adjust.

The training and preparation Shepherd provides people with quadriplegia makes the difference. “It is our mission to give this patient population the skills they need to get back to a top quality of life and inclusion in the community,” says Donald Peck Leslie, M.D., medical director of Shepherd Center.

Patients David Wheaton and Edward Metzger visit the High Museum in early 2012 along with friends, family and therapeutic recreation staff members from Shepherd Center.

That mission begins on day one. Patients are assigned to a team of physicians, physical, occupational, speech, respiratory and recreational therapists, as well as nursing staff and counselors, who immediately assess the patient’s needs and then develop an individualized plan to meet those needs.

Acting quickly is important. Early care can prevent secondary complications, as well as a loss of strength and endurance because of immobility. An advantage for Shepherd Center is that it can admit patients with high-level injuries within days after injury, so no time is wasted.

“Shepherd has the ability to take acute patients, such as those who are intubated, on tracheal tubes or with active illnesses, and many rehabilitation facilities cannot do that,” says Robert O’Connor, M.D., a trauma surgeon at Lee Memorial Health Services in Fort Lauderdale, Fla. He refers many patients to Shepherd. “The earlier and more aggressive therapy can begin for this patient population, the better quality of life they can have post-injury. Even an extra week’s worth of therapy can make a difference.”

Another factor that sets Shepherd apart is its success in getting those dependent on a ventilator to breathe on their own. Dr. Leslie notes that Shepherd Center is the only rehabilitation center in Georgia that admits patients on ventilators, and with two full-time pulmonologists and a staff of respiratory therapists, the hospital has a high success rate in ventilator weaning.

“Ventilator-dependent patients require specialized care and equipment, which can be a huge financial burden on their families,” Dr. Leslie says. “They are also prone to more complications, such as pneumonia. And some have to live in long-term care facilities. So we do everything we can to get them off the ventilator.”

Beyond immediate action and efforts to gradually wean from the ventilator whenever possible, Shepherd takes a comprehensive approach to helping people with quadriplegia live more independently.

For one thing, patients with high-level quadriplegia attend classes and outings that are designed specifically for them. The classes cover counseling, speech and breathing techniques, assistive technology and therapeutic recreation, among other topics.

“Peer support is a big part of Shepherd Center,” says Shari McDowell, PT, SCI inpatient program manager. “It can help a patient turn a corner when he or she sees what others are going through or have been through. We pull this patient population together so they can support each other.”

Patients David Wheaton and Edward Metzger visit the High Museum in early 2012 along with friends, family and therapeutic recreation staff members from Shepherd Center.

Shepherd patients also learn about specialized equipment to help them adapt to life with a disability. Recent years have brought breakthroughs in assistive technology equipment, seating and driving systems, and other devices that help maximize function and independence. “It’s really amazing what’s out there,” says Polly Hopkins, inpatient therapy manager. “Assistive technology has become more affordable and is constantly changing.”

The Therapeutic Recreation Department plays a big role in helping patients with quadriplegia return to the community. While at Shepherd Center, patients go on excursions to stores, movie theatres, museums, bowling alleys and other places – and they leave prepared. Classes help them address issues that can arise in the community, such as people’s reactions, accessibility and how to maneuver. The outings enable them to practice those skills.

“If they experience the world while at Shepherd, they are more likely to do it on their own after they’re discharged,” says Rachel Roback, CTRS, a therapeutic recreation therapist. “Shepherd staff serve as a backup, and we encourage family members to come along, as well.”

As they prepare to leave Shepherd, “Shepherd Care” classes present caregiving issues, such as recruiting, interviewing and hiring an attendant. And the Marcus Community Bridge Program helps with community resources, transportation, medical equipment and financial issues after discharge.

The percentage of Shepherd patients who transition back into the community, as opposed to a long-term care facility, is higher than most rehabilitation hospitals, McDowell says. “We have so many resources available to provide the best care,” she says. “We throw everything we can at them to make them successful. And we are constantly looking at the program to make it better.”

This striving for excellence and focus on patient care makes Shepherd successful with this patient population, Dr. Leslie says. “We have a staff that is dedicated to improving the lives of people with disabilities,” he says. “They want to see our patients succeed, and their ‘can-do’ attitude is very important to have.”

Janice Thompson

When Janice Thompson, 57, of Atlanta, hit a tree head-on with her car in 1998, she was so severely injured that doctors gave her a 5 percent chance of survival. And because she broke her neck at the C-5 level, doctors predicted that if she did survive, Janice would be on a ventilator and feeding tube for the rest of her life.

But Janice proved the doctors wrong. Not only did she survive, she has been living ventilator-free for the past 13 years, with no feeding tube.

“God left me here for some reason,” Janice says, “and I am making the best of it.”

Janice was living in Hattiesburg, Miss., at the time of her accident and received her initial rehabilitation in that area. When she moved to Atlanta in 2002 to live with her daughter, she participated in the SCI Day Program at Shepherd Center for eight weeks.

Through the help of a mobile arm that hooks onto her wheelchair and provides shoulder support, Janice is learning to accomplish several tasks on her own, such as brushing her teeth, feeding herself and picking up small objects. She uses an environmental control unit – activated by a sip-and-puff interface similar to the one she uses

to navigate her wheelchair – to control lights, the TV , an adjustable bed and other features of her home. She’s also relearning how to write.

Janice, who is unable to work, goes to Shepherd Center twice a week for aquatic therapy, and she exercises at home with gym equipment. “I try to stay as active as possible to improve my strength,” she adds.

One thing she doesn’t do, she says, is wallow in self-pity.

“God didn’t keep me here to feel sorry for myself,” she says. “I know things could be a lot worse.”

Jason DiSanto

To Jason DiSanto, 37, of Atlanta, no challenge loomed larger than the stigma of being in a wheelchair.

“I was worried about how I would be treated,” recalls the electrical engineer for GE Energy, who sustained a C-5 complete spinal cord injury in a 2009 diving accident. “Sometimes people don’t know how to approach you, and you feel conspicuous.”

Fortunately for Jason, acceptance was not a problem when he returned to work. “They were excited to have me back and treated me like I had never left.”

After two months in rehabilitation at Shepherd Center, Jason spent six months acclimating to his new life and learning how to use adaptive equipment. He navigates a power wheelchair with a sip-and-puff interface and

relies on an aide to take care of daily needs.

His progress was remarkable: A year after his injury, Jason returned to his same job at GE Energy, where he’s worked in various capacities for 15 years. Today, he provides technical expertise to customers who have power generation equipment.

“They really wanted me back, so it wasn’t an issue to return to work,” he says, adding that the company purchased necessary equipment, adjusted his desk to accommodate his wheelchair and cleared the way for his aide to come to work with him. “They were very receptive to all the changes and adaptations that needed to be made and did a lot to get me back to work.”

With the help of Dragon Naturally Speaking, voice recognition software that translates words into text, and an adaptive mouse he controls by moving his head, Jason is able to use a computer. Bluetooth technology makes it possible to operate a cell phone.

Despite the challenges he has confronted since the accident, Jason has tried to maintain a positive attitude. “It’s really the way I was raised,” Jason says. “My mother and grandmother taught me to always be positive, despite whatever was happening. Even now, I have more good days than bad.”

David Ellis

David Ellis, 70, of Atlanta, was standing behind a truck in May 1997 when it began to move backwards, pushing him down a hill and eventually rolling over him. He sustained a C-3 to -4 complete spinal cord injury. David spent five months at Shepherd Center, weaned off a ventilator after nine months and was able to return to his job two years after his injury.

He now visits patients at Shepherd Center to share his experience in hopes the peer support he received when he was a patient will provide the same hope and encouragement.

“Peer support was so important to me,” says David, who is also a Shepherd donor. “The whole environment was stimulating. You’re in a group of people with similar characteristics. There is a lot of hope and enthusiasm generating around.”

David does admit that his situation has been frustrating at times. As an investment banker at EGL Holdings, a company he co-founded in 1988, he traveled extensively overseas. After his accident, it became complicated to take trips that once were routine, so he does not travel much anymore. He also experimented with different adaptive technologies and equipment to find the things that would help him at both work and home.

“It’s been a lot of trial and error,” he says, “but technology has come a long way over the years.” Voice recognition software allows him to use his computer. At home, a Guldman lift helps him move around his house, and the advent of smaller, wheelchair-accessible vans makes it easier to maneuver around town. He can communicate with friends, family and colleagues through his computer and cell phone with Bluetooth technology and a headset.

David credits his strong support system for his ability to get back to “normal life” as much as possible. “The support of my friends and family through all the challenges and obstacles helped me see I could make progress and enabled me to keep looking forward and not backward,” he says.

Tongue and Drive: An Innovative New Study

Though they’ve never met, Jason DiSanto and Janice Thompson have more in common than quadriplegia: They are both participating in a Shepherd Center and Georgia Institute of Technology clinical trial of a new wheelchair navigation and communication device called the Tongue Drive System.

The technology includes a magnetic tracer – the size of a lentil – placed on the tongue; the user wears a wireless headset outfitted with sensors that track the movement of the magnet in the mouth. It then interprets the commands and interfaces with the wearable part of the system (an iPod) to translate the information into action.

“Everything you do now with separate devices can be done with one system,” says Jason, who also serves on a steering committee working with the Georgia Tech researchers. “It has the function of several devices, including steering a wheelchair, operating a computer, playing video games and more.”

Researchers say the commercial version is years away, but Janice says she’s happy to help with the research, even if she doesn’t see the results in her lifetime. “Someone had to test the sip-and-puff (interface for the) wheelchair so people like me could use it,” she says. “I’m glad I can help people in the future to do things better.”

For more information, see _ files/TongueDrive.htm.

About Shepherd Center

Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.