Seizure Diaries: Focal Point
Dear Diary,
Is it possible for me to write about a subtle yet dramatic change in my seizures? I could say that I have changed, or my brain has changed, but that is too subtle and doesn’t capture what is going on in my head. As you know, in 2018 the Neuropace was implanted in and on my brain. I am gradually seeing that the device has somehow changed me.
The electrical forces that spasm from time to time seem to have altered the type of seizures I am experiencing. The predominant seizures I am having now are called “Focal Onset Seizures.”
Focal onset seizures are different in duration from my normal seizures. They are short — lasting between 10 and 30 seconds.
In the middle of the shorter, 10-second episodes, called “focal aware seizures,” I feel my brain forces going awry, but I can understand what people around me are saying, yet I can’t verbally respond to them. During the 20+ second or longer seizures, called “focal impaired awareness seizures,” I am pretty much out of it. I can appear unconscious or semi-conscious and in a daze. I am not able to communicate at all with people around me and have to let the moments pass.
Not to say that these focal seizures are the only seizures I am having lately. The number of momentary auras has increased and according to my diary records, I still get more than my share of grand mal and petit mal seizures. I have from 40-50 per month. Luckily for me, most of my seizures, focal and others, occur in the privacy of my home.
When I am walking in our public parks, however, it is another matter all together. First, I am embarrassed about my seizures. People look at me as if I am contagious and sometimes run away or take their children’s hands and walk in the other direction. My wife, Steph, is with me and no one asks her if they can help me or even if they can talk about what they are witnessing with her. Steph helps me out without saying a word. She does her best to stabilize me and keep me comfortable until I get back to my conscious self.
Every episode is not all bad. Most seizures, Steph is at work and I am home alone to deal with them. My vegus nerve stimulator can help lessen the pain. And I am learning new things I can do to my diet and habits every day.
One positive thing is I am not really alone; our dog, Jaxon, is always at my side. I know that he means well. When I am having a grand mal seizure, Jaxon sees me struggling and he positions his body next to mine to stop my legs and torso from shaking. Steph had to tell me that he has been doing this. Jaxon is not a trained seizure dog, but his instincts are to help protect me, which I find remarkable. Jaxon may not know what he is doing, but over time he has figured out that he can help me.
Man’s best friend, for sure.
That is it for now. I will send another diary entry soon.
Love,
Charlie
Henry E. Hooper 