Earle Powdrell, 64, an aerospace engineer and brain stem stroke survivor, will be attending Roll on Capitol Hill to urge representatives to provide people living with spinal cord injuries and disorders (SCI/D) in Texas greater access to quality affordable healthcare, community integration, complex rehab technology and accessible transportation.
Powdrell, who has a Bachelor of Science in Aerospace Engineering from the University of Colorado, spent much of his career developing technology for the aerospace industry and national defense. He now wants people with disabilities to have access to the same technology to improve their quality of life.
“Even if I only improve the life of one individual it is worth it. Roll on Capitol Hill gives me my voice back,” Powdrell said.
Powdrell is concerned with the potential impact of the Affordable Care Act (ACA) repeal.
“No family in America can afford a catastrophic illness or event. We should not balance a budget while we deny care to our community and our veterans,” said Powdrell.
“I believe we can more effectively manage costs and then provide greater benefits to the individuals who desperately need this level of care from catheters, seat cushions, caregivers, and independent living,” he added.
Roll on Capitol Hill, now entering its 6th year, has become a valuable platform for United Spinal member advocates like Powdrell to lead the charge to protect disability rights.
The Roll also offers the opportunity for advocatestheir personal stories with legislators and provide context to critical policies that affect wheelchair users and other people with pre-existing conditions.
Powdrell had a massive brain stem stroke during a business trip 8 years ago that left him a quadriplegic. After reviewing his MRI, doctors told his family that he was in a vegetative state and would not recover or regain cognition.
However, his wife of 38 years Kathy, who is also his caregiver and biggest motivator, witnessed signs that Powdrell was trying to communicate with her by blinking his eyes.
“They had told my family that my blinking was only primal reflexes. Nobody believed them. This was the glass coffin you hear of,” Powdrell added.
“Finally, the ICU doctor came in and asked me basic questions. I heard him tell my family that he was a little impressed. Then he asked a higher-level question, to check my cognition. ‘What is the square root of 25?'”
With 5 blinks, Powdrell’s life was saved.
He was diagnosed with locked-in syndrome, a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except those that control eye movement. The syndrome affects approximately 1 percent of people who have a stroke, and there is no recognized treatment or cure.
Powdrell was originally transported to Memorial Hermann Mischer Neuroscience Institute at the Texas Medical Center by Memorial Hermann Life Flight® and then transferred to TIRR Memorial Hermann where he spent 7 months in rehabilitation, learning to perform basic daily functions such as swallowing, eating and drinking. He also learned how to control a specialized wheelchair with his head and chin and use the Tobii eye-tracking communication system.
He now shares his experiences as a stroke survivor, advocate, and motivational speaker encouraging others to never give up hope.
“I am not what you see in this chair. I will not be defined by this stroke. I want to leave the world a better place,” he said.
Powdrell, along with United Spinal, has supported the Able Act. Signed into law by President Obama in 2014, the law creates tax-advantaged savings accounts for individuals with disabilities and is currently in 22 states across the country.
Powdrell and United Spinal also support the Steve Gleason Act, which makes critical technology available to individuals with ALS and other neurological disorders through Medicare and Medicaid.