Hello world, welcome to the online home of the J.L. Wiley Foundation.
In August of 2009 Joe Wiley suffered a pontine hemorrhage or brain stem stroke. When we were told the diagnosis our initial thoughts were positive, if it only hit his brain stem then his cerebral functioning should be left largely intact. As the hours wore on and we began to do research we learned the horrible truth that brain stem strokes are among the worst with which to deal. Your brain stem controls so many vitally important functions including breathing, heartbeat, and blood pressure and voluntary actions like body movement and swallowing. More than half of brain stem stroke sufferers pass within the first 30 days after the stroke. Joe made it for about 16 months before succumbing to infection. In that span of time we were in numerous hospitals, rehab facilities, and nursing homes. Some for as few as 20 hours. The last months were spent in facilities in South Florida, more than 300 miles from his home as a result of the reimbursement rates of insurance companies and the unwillingness of facilities closer to home to accept the challenges that he dealt with.
Doctors told us within the first week that he would never get any better, he would never respond or interact with us again and that we should consider ceasing lifesaving activities at that point. On the night before he was transported to South Florida, 11 months after the stroke, when I told him that I wouldn’t get to see him every day anymore because of the distance he began to tear up.
The worst possible outcome for someone that has suffered a brain stem stroke is Locked-In Syndrome. Sufferers have reasonably normal brain function but because of damage to the brain stem they have no way to express themselves or communicate. There are varying degrees of severity. One of the more notable individuals to suffer from Locked-In Syndrome was Jean-Dominique Bauby, he was the editor in chief of Elle magazine and was able to write a memoir using eye blinks to communicate. This is a unique view into what it is like to experience this condition. The book, “The Diving Bell and the Butterfly” was later adapted into a screenplay.
In January 2010 we determined that Joe could also communicate through eye blinks. It was a very exciting evening in the hospital when I first asked him to look down for me and he did.
Ultimately all of our efforts at rehabilitation were cut short by the harsh reality of life in hospitals and other medical institutions. He contracted a severe antibiotic-resistant infection called klebsiella. The treatment for that infection ultimately damaged his kidneys to the point that he required dialysis, further complicating his care.
On this site we will continue to tell Joe’s story, and all of ours as we all shared this experience. Additionally we will provide information and references about stroke prevention and treatment and other initiatives that we are taking on. Look to the above tabs for information about current and past fundraising events as well.