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Coming Together:
PVA Summit 2013

Reprinted from PN/Paraplegia News November 2013

Consumers, scientists and clinicians join forces at the PVA Summit 2013 + Expo with one goal in mind: Improve the quality of life for those with SCI/D.

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In its third year, the Paralyzed Veterans of America (PVA) Summit brought hundreds of nurses, doctors, therapists, social workers, researchers and exhibitors to the Renaissance Sea World in Orlando, Fla., Aug. 27–29, to share the latest and greatest techniques, innovations and inventions in spinal-cord injury and disease (SCI/D) medicine. 

PVA President Bill Lawson says he is proud of the Summit and thinks it accomplishes the original goal of PVA, “quality of care for veterans with SCI/D.” This goal remains PVA’s mission statement.

 “I think our founding fathers would be very proud of what their vision has developed into with this Summit,” Lawson adds. 

Putting the Patient First

Traditionally, information shared at the Summit comes from the experience of clinicians and leaders in academia. This year, Sherman Gillums, Jr., PVA’s associate executive director of veterans benefits, showed attendees a whole new view of SCI/D rehabilitation.

“You rarely hear the patient or the person who gives these professions their purpose talk about the profession and the impact it has in both positive and negative ways,” says Gillums who was clinically diagnosed with quadriplegia, secondary to traumatic injury to the C-6/7 vertebra. “I think that kind of gives you … another way of looking at what you do if you are a doctor or a nurse or a therapist. You appreciate better how your actions, or how you work impacts those you are working on if at some point you stop and listen to them.”

Opening his keynote speech, Gillums reminded the clinicians in the audience to remember each patient they deal with is an individual. He says he reminds professionals that “they are dealing with people, not statistics or commodities.”

With that in mind, each patient has a different goal and for him that’s not “going home, it’s not playing a sport, it’s not just basically being healthy … PVA believes that the end of the rehab journey is gainful employment.”


PVA President Bill Lawson gets a demonstration of the SmartDrive power assist device for manual wheelchair users (max-mobility.com).

This means adjusting the approach taken in rehab. Rather than therapists helping patients dress just to get out of bed, they need to help them dress to go to work. Instead of focusing on simple writing in occupational therapy, think of typing on a computer for a job.

“I think that if the therapists and clinicians are more mindful that this work potential is more about drive and what the individual believes he or she can do when they are elected to tailor their rehab around an objective that has to do with getting out of the house every day and earning a paycheck, not just relying on benefits … their mind is open to exploring them,” Gillums says.

He also stressed seeing facilities go from their standard of care to a standard of excellence.

“We talk to patients who will often identify [some] hospitals that meet the standard of care because they do the bare minimum,” Gillums says. “The standard of care doesn’t have to be where it stops and so hopefully that will inspire people to look at how other facilities are … conducting SCI care and maybe borrow some of those best practices from those facilities.”

Rise in Technology

Being combined with an Expo, it’s no surprise that up-and-coming technology was a popular topic, beginning with the opening session given by Rory Cooper, PhD, Professor of the Department of Rehabilitation Science and Technology at the University of Pittsburgh and his wife, Rosemarie Cooper, MPT, ATP, Director of the Center for Assistive Technology at the University of Pittsburgh Medical Center.

Last year, Cooper presented robotic technology being introduced in electric-powered wheelchairs and stresses its importance even more now.

“Technology plays a critical role in promoting health, independence and participation in people with spinal-cord injury and technology continues to advance and will continue to play a significant role for the foreseeable future,” Cooper says.

The future of robotics looks hopeful to Cooper for both daily use and in Department of Veterans Affairs SCI/D centers for therapy. He says they’ll make power chairs “smarter, and more programmable and tuneable to users.”

In between sessions, attendees discovered more technology among new products presented in the rows of booths that filled the Expo. Exhibitors came prepared with demonstrations and samples of many items including collapsible wheelchair wheels, sit-to-stand chairs, easy-to-use catheters and new software for powered chairs.

There’s an App For That

Cooper didn’t stop with robotics. He and his wife also stressed the impact intelligence systems will have on people with SCI/D.

In particular, a smartphone app called Virtual Seating Coach. The app uses sensors that help the user utilize the functions of their power seat while also sending information to clinicians.

Cooper says similar smartphone apps will become common in helping patients with “taking medications, controlling weight loss, helping reduce the risk of metabolic syndrome and diabetes.”

Teaming Up

Each representation at the Summit — clinicians, consumers, scientists — plays a critical role in making change.

“It’s important to work in interdisciplinary teams and that being grounded in the needs of consumers, specifically consumers with spinal-cord injury and also with clinicians, is necessary to ensure that your research is … relevant and … has the highest potential for having a positive impact,” Cooper says.

A positive impact on the patients that is, and Gillums’ contribution reinforces that idea.

“I can take sort of a culmination of all those experiences and they’ll listen to me in this setting and I know they’ll hear it,” Gillums says. “Now whether they take it back and use it is another thing, but at least they will have heard it at some point and maybe, even if it’s only one person or one doctor or one nurse, maybe it will make a difference.” 

 

 

 

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Coming Together:
PVA Summit 2013

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