#CharlesDeservesToLive
Charles Locklear has been a fighter his whole life. In his youth he joined the Navy during the Vietnam War and served our nation with honor. Now 67, Charles is fighting his biggest battle and for the most important of reasons.
He is suffering from a very rare "locked-in" syndrome: he can't speak and is paralyzed from the neck down. His brain is intact but he can only communicate through the movement of his eyes. Charles is already slightly recovering from the stroke and regaining some range of motion in his neck muscles. He can keep his torso up by himself which means he will be able to use a wheelchair soon. Physical therapists say they see potential in the left arm. Engineering breakthroughs for his condition already exist, it's also a question of money to be able to take advantage of them. Charles could give up but he's still fighting so he can be there for his wife and 9 year old son.
Unfortunately, within US healthcare system, there is no place for Charles to continue living. His condition is not "acute" so the Veteran's hospital is pushing him out. Due to his dependence on additional oxygen provided directly through a tube to his trachea, and due to the fact that he can not call for help, his oxygenation rate and heart rate need to be monitored 24/7. Nursing facilities, under our current healthcare system, don't provide 24/7 monitoring. Therefore sending him to a nursing facility is a death sentence.
Charles is being well taken care of at the Veteran's hospital, however this is not a long term solution. What we are asking is for Congress to create a special ward connected to the Veteran's hospital, which would provide hospital level monitoring for patients requiring long term care, easy access to the Emergency Room, imaging equipment and specialist care, such as eg. alternative communication technology for "locked-in" patients, but at the same time provide rehabilitation services. My husband had a stroke that left him unable to speak on November 9th and has STILL not been fitted for a communication device 7 weeks later as well as has not received physical therapy for the parts of his body that can partake: his neck and his left arm.
Please help us and others in his situation! We know immediate temporary solutions are possible.
He is suffering from a very rare "locked-in" syndrome: he can't speak and is paralyzed from the neck down. His brain is intact but he can only communicate through the movement of his eyes. Charles is already slightly recovering from the stroke and regaining some range of motion in his neck muscles. He can keep his torso up by himself which means he will be able to use a wheelchair soon. Physical therapists say they see potential in the left arm. Engineering breakthroughs for his condition already exist, it's also a question of money to be able to take advantage of them. Charles could give up but he's still fighting so he can be there for his wife and 9 year old son.
Unfortunately, within US healthcare system, there is no place for Charles to continue living. His condition is not "acute" so the Veteran's hospital is pushing him out. Due to his dependence on additional oxygen provided directly through a tube to his trachea, and due to the fact that he can not call for help, his oxygenation rate and heart rate need to be monitored 24/7. Nursing facilities, under our current healthcare system, don't provide 24/7 monitoring. Therefore sending him to a nursing facility is a death sentence.
Charles is being well taken care of at the Veteran's hospital, however this is not a long term solution. What we are asking is for Congress to create a special ward connected to the Veteran's hospital, which would provide hospital level monitoring for patients requiring long term care, easy access to the Emergency Room, imaging equipment and specialist care, such as eg. alternative communication technology for "locked-in" patients, but at the same time provide rehabilitation services. My husband had a stroke that left him unable to speak on November 9th and has STILL not been fitted for a communication device 7 weeks later as well as has not received physical therapy for the parts of his body that can partake: his neck and his left arm.
Please help us and others in his situation! We know immediate temporary solutions are possible.
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