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Paul Duke: Using his computer to stay connected

Paul Duke: Using his computer to stay connected



Name: Paul Duke



Birth date and age: Duke is 33. His birth date is Oct. 30, 1969.



Hometown: Duke lives in Woodford, Va.



Disability: Duke has Duchenne muscular dystrophy. He uses a power chair and a ventilator. With his limited use of one thumb and an index finger on his right hand, Duke operates his computer with an industrial track ball he has modified with popsicle sticks and masking tape to use the click and drag buttons. IBM's Via Voice, a voice dictation system, is another feature on his computer.



Employment: Duke described himself as a "retired stunt crip because of the sciatic nerve injury from testing extreme access situations for the 'Virginia Travel Guide for Persons with Disabilities.'" He uses this joke to explain why he is less active than he used to be. The compressed sciatic nerve causes Duke great pain, but it is just a result of his condition. He can tolerate about three hours per day seated in his wheelchair. The rest of the time he rests on a special mattress to prevent pressure sores. Duke actually volunteers to do research for his parent's company on the Internet.



Hobbies: Duke enjoys reading e-books and listening to audio books, especially techno-thrillers. He likes watching the History Channel or DVDs, playing computer games, and surfing the Net to study military history, especially aviation and armor. Duke said he is a big Star Trek and Stargate fan, so he makes sure he does not miss any episodes.



Role models: Duke explained why he admires his late Grandfather Duke, who had rheumatoid arthritis. "In fact," Duke said, "everyone thought I was imitating his movements when I actually had muscular dystrophy." Duke's grandfather was in great physical pain and experienced diminished mobility, but according to his grandson, he always found something productive to do within his capabilities or found a way to modify something so he could do it. Although Duke was 6 years old when his grandfather died, his positive attitude inspired the boy. He, and Duke's parents, made a major impact on Paul's life.



Favorite quotes: Dukes said he has several expressions that he considers to be tops on his list. "To boldly go where everyone else has gone." "Lead, follow, or get out of the way." "If no doorway exits, make one."



What are your future goals and aspirations? Duke said he hopes he can continue living outside of a nursing home. He has had two septic infections since Memorial Day, where the doctors wrote him off, but he recovered. "My short term goal is to make people aware of the acute caregiver shortage in this country," he explained. "Because of being vent dependent, skilled care nursing (LPNs or RNs) is required." He has 16 hours of care per day, plus respite hours, and he can find only a few nurses who want to do home care in a rural setting. His parents have to juggle the family business with their son's care needs, with the business usually getting the short end of the stick. "Without their faith, determination and dedication, I wouldn't still be alive or would be institutionalized," Duke concluded.



"I would like to live long enough to see the ADA and persons with disabilities achieve the civil rights we are fighting for. The reality is that this may not happen within my lifetime, but the good news is that disability community is beginning to realize our power and potential," Duke said. "We are becoming more confident in raising our voices and expressing our desires, especially in political and social concerns."



I believe I can do anything within my ability, because I set my mind to do it.



Reprinted with permission from http://www.ican.com

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