The newfound physical freedom Bart Brophy gained about three years ago could be short-lived.
Brophy injured his spine while playing indoor lacrosse as a 20-year-old college student. He's paralyzed from the waist down and has impaired mobility in his hands. He's been wheelchair-bound for 30 years.
Brophy found new confidence when friends helped him purchase his expensive but empowering iBot wheelchair. The $23,000, self-balancing chair was created by Dean Kamen, known for his other invention, the Segway personal mobility device. Now, the Hardeeville resident
worries that gift will soon be taken away from him and hundreds like him -- including injured war veterans -- who depend on the device every day. The chair's manufacturer is no longer selling it and will stop servicing it in 2013.
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"This is a great thing that is about to be taken away from (disabled) people, including vets," said Brophy, whose ties to the military run deep. Brophy worked for a defense contractor for eight years. His father fought in World War II and his brother in Vietnam.
He wants to spread the word about the iBot's importance and possible demise through many networks, including those connected to injured veterans such as the Independence Fund, Wounded Warrior Project and Hidden Wounds.
"I believe there should be a civilian fund or a general fund to help people with durable medical equipment (who are) limited by managed care and silly bureaucracy and a lack of imagination," Brophy said.
IBOT'S FUTURE UNCLEAR
Several of the injured veterans who recently came to Beaufort for the Lt. Dan Weekend sported their iBot chairs with pride. Retired U.S. Army Capt. James Howard was among them. He is hoping Kamen will bring the iBot back. In the meantime, Howard urges those who have iBots or those who want them to never give up: "You just can't take 'no' for an answer. You can get what you deserve. You just have to keep on trying."
Howard, a civil engineer who was paralyzed two years ago, is writing letters to his congressmen and Kamen's DEKA Research and Development Corporation, urging them to keep the technology alive that allows him so much freedom.
"For an iBot owner, the two biggest concerns with this are the limited timeframe for support and the absence of an iBot bracket that locks into a Vehicle Docking System," Howard said.
IBot owners have said that the chair has been discontinued in part because relatively few were sold in 2007 and its manufacturers had problems getting reimbursed from the Centers for Medicare and Medicaid Services.
IBot developers Independence Technology ceased sales and marketing of the mobility system in January 2009 and will only provide technical support and service to iBot owners through the end of 2013, said Carol Goodrich, director of corporate media relations for Johnson & Johnson, the parent company of Independence Technology. She said the iBot "demand did not prove sufficient to create a sustainable market."
Howard suggests funding to purchase the chairs could come from Paralyzed Vets of America, the Independence Fund and the Care Coalition. Howard is a board member on all three groups.
Steve Danyluk, founder of the Independence Fund, said the group has purchased 20 iBot chairs for veterans, but he knows of about 300 more who need the chairs.
"That's a lot of iBots, but it's also a lot of veterans who gave up their ability to walk -- and the independence that most of us take for granted -- who could have truly been supported," Danyluk said. "Nine million dollars would have been sufficient enough to purchase every deserving veteran who lost his or her mobility fighting the war on terror with an iBot."
In addition to the purchase price, maintenance costs for an iBot can be high. A new battery costs as much as $1,200. Often insurance companies and the government do not want to pay for the costs of the medical devices. When Brophy, a former director of the Independent Living Center in Savannah, first bought his chair, Medicaid said it was "experimental and unnecessary," but finally covered about $4,000.
THE IBOT ADVANTAGE
The main advantage an iBot has over other wheelchairs is its ability to allow the user to rise from a seated position to up to 6-feet tall. When the chair is in standing mode, Brophy is able to be more self-sufficient. He can reach items on the top shelf of the refrigerator and in the kitchen cabinets. Outside, he can reach items in the garage. He also enjoys being able to have eye contact when talking with people.
"My life is a lot different in the iBot than when I was in a power chair before," Brophy said. "Confidence-wise, I feel good getting in it. I feel good getting out and doing stuff in it. It makes me kind of unstoppable. When you are worried about your chair doing this and that, you worry about going certain places."
One of the benefits of the iBot for Brophy is the added balance it provides -- something other power wheelchairs can't do. In a regular wheelchair, when Brophy leans forward he must hold on with one hand, then reach out to grasp something with the other. The iBot's gyroscope works to keep Brophy balanced when he leans forward, allowing him to reach out with both hands.
Selecting food at the local deli is one example of Brophy's newfound confidence. The chair raises onto two wheels, bringing the person sitting in it to eye level with most people. This mode allows someone to review what's in the glass counter at the deli and reach over it, or talk to a bank teller.
"It is called 'balance mode' when you go into standing," Brophy explained. "I can lean, and it calculates the center of gravity and makes you even. When I go into that mode I can do things with my arms that I couldn't do."
The iBot's two sets of powered wheels allow users to go through sand, gravel and water up to 3 inches deep. It can climb 5-inch curbs, stairs with some assistance and traverse rough terrain. Being cool is also important, Brophy said.
"I used to try to tell parents not to drag their kids away from looking at (the iBot) when they would come up to me and say 'Oh, what kind of chair have you got?' This helps kids to be more open to (other) kids with disabilities," Brophy said. "I kind of use it to show off, and I feel like I am teaching them something about gyroscopes. If you are into science and physics and that kind of stuff it is fascinating for people to look at."
Brophy hopes someone will come forward to help iBot users before their medical devices become totally defunct. Should no company or individual come forward to help iBot users, Brophy said he will grudgingly return to a power wheelchair.
"I feel that this is a setback, an injustice. I am angry, actually. ... The iBot has given me a second wind. We have been asked to suck it up, be tough, endure minimal assistance -- the vets especially. I was born a privileged white kid who became a member of the biggest minority group with a long history of discrimination and being recognized last."