Jay Hennessy - A Consumer’s Perspective: Two Minutes Could Change Your Life
Posted June 30, 2017
FY2017 ERP Consumer Vignette
Consumer: Jay Hennessy, Epilepsy Foundation of Florida
Epilepsy Foundation of Florida
Epilepsy Foundation of Florida
I was diagnosed with epilepsy in 2010 from a traumatic brain injury, which developed into post-traumatic epilepsy, and I have been traveling the world seeking the best care that I can from epileptologists.
So my journey started approximately seven-plus years ago from a traumatic brain injury. I was knocked unconscious from a recreation motorcycle accident. I should have went to the hospital and I didn’t. Typical man: “I’m fine. I’ll get up.” I went inside. I did not know the extent of the injury I had. I actually bruised my brain. Thank God, there was no bleeding, but I bruised it really bad. Ten days later is when the epilepsy started.
I went into two status seizures. One lasted over 20 minutes, and I woke up in the ambulance as they were transporting me. Once I got to the emergency room, I had a second terrible status seizure, which lasted approximately 15 minutes. So I was in the hospital for six or seven days until they felt comfortable enough to discharge me.
So I did not have an understanding at that point of this was–this was the beginning of my life. It’s journey now. [Emotional] And from that point on, the next two years was a process of everything in my life being completely stripped away, everything that I valued, everything that I loved, everything that I had worked for was slowly taken away.
I now had to rely on my parents, so my parents had to step in and take care of me. I couldn’t take care of my children. It had gotten to that point. My seizures were so bad, so frequent all day long…
I couldn't do anything…at all.
And I had broke my neck C4 through C7 with two of my bad seizures. The neurosurgeon that was doing the operations on me, he at that point after my third bad seizure, diagnosed me properly because he was concerned if I was to have another one it could undo all the work that he’s done in my neck and possibly paralyze me.
So he diagnosed me himself, not the neurologist, with intractable epilepsy and sent me a referral up to Tampa General USF to see an epileptologist who was the Director of Medicine there.
And that started the additional journey of improvement, so this is where the improvement in my life started to come.
I got involved with the DoD Epilepsy Research Program through my executive leadership team in the Epilepsy Foundation of Florida.
So I went through the process of being interviewed and working through the candidates and finally being accepted. So this is my second year now participating in it. I was in the first founding year of it, and what an amazing inspirational process it was for me.
The DoD Epilepsy Research Program is focusing on Veterans that have TBI, or PTE, which is traumatic brain injury and post-traumatic epilepsy.
So having this program provide funding for the appropriate research and studies that need to be done to improve the quality of life and to give appropriate diagnoses immediately for their care and utilize the appropriate testing from beginning of first diagnosis through the latency period, which is the period where you have the traumatic brain injury, but no seizure may have occurred…This is a key area where the scientists are looking to step in, find answers right away, and immediate steps that could be taken the second that that injury occurs. Especially on the battlefield.
Everyone knows when you have a traumatic injury like that you’re going to get swelling—inflammation. So even though it’s within your cranium, right now they’re researching that. What could be applied in the field right away? And if it’s only there for two minutes before you get back to the medical unit, that two minutes could change your life. So that’s a great area of what I see there’s an enormous amount of value there.
Being involved with the DoD Epilepsy Research Program, it’s been one of the most beneficial improvements of the quality of life that I have. It's an amazing program and I would hope over a period of time that additional peer consumers could come in and do critiques. I can really contribute."
When you’ve had the severe seizures, the tonic-clonic seizures, the Grand Mal seizures, the status seizures, one of the words that is discussed with those type of patients is SUDEP, sudden unexpected death due to epilepsy. As a patient diagnosed with epilepsy in my case, SUDEP never leaves my mind. I know that my next seizure could absolutely be the next time the lights never come back on. But I want the lights to come back on. I can make a difference.
Jay passed away on May 24, 2017 from complications related to epilepsy.
Last updated Wednesday, March 27, 2019