Heck, 10 to 20 seconds isn’t any time at all to get anything on my to-do list accomplished but it is long enough for Robert to have his typical seizure.
|Robert's helmet has taken a few good knocks|
Head down and to the right.
Tugging on his clothes.
Giggling as he awakens.
If he is standing and has a seizure and there is no one behind him, he falls backwards to the floor (or against a wall or onto the toilet). Looking at the many scrapes on his helmet tells me that is the best piece of medical equipment he could have.
Robert doesn’t know when he has a seizure and will usually argue with me if I tell him he had one. I stopped telling him unless he asks or he lands on the floor (he has had enough seizures in his life to realize if he wakes up on the floor, he had a seizure).
The typical seizure for Robert doesn’t involve convulsing and doesn’t usually last very long. A couple of years ago and with his permission, I filmed one of his seizures to give people an idea of what they look like since his aren’t like they are portrayed in the movies.
Robert’s seizures are uncontrolled and I’ve always estimated he had probably five seizures in a week. It was really difficult to gauge because New Home never kept track like they were supposed to and would give me seizure logs showing maybe three seizures a month if I got a log at all. I knew he was having more than that because he had them almost daily when he was with us on the weekends.
Now that he lives with us, I have been able to keep better track of his seizures. It’s difficult to know if he is having more than normal because they weren’t always noted before he lived with us. Either Richard or I are always with Robert and even if we aren’t, we are watching him on a video monitor. I’m fairly confident we are aware of most of his seizures (although, at ten seconds a shot, it is easy to think we miss a few here and there).
Since moving in with us, we have recorded Robert having at least two seizures every day. Sometimes more than that but rarely lasting a minute or longer. There’s a seizure in the morning while he is getting cleaned up for the day which I can prepare for (he’s standing when it happens so I’m prepared to catch him). So far, that’s the only one that is predictable but I feel lucky there’s any consistency at all since one of the biggest problems with seizures is how they strike without warning. Sure, there are triggers which people can figure out but it’s never consistent (at least we haven’t found them to be).
Three to four minute seizures are really at the extreme of his “typical” range. A few years ago, Robert had a cluster of long seizures just after moving into New Home. As it turned out, it was because Nurse Ratchet had arbitrarily decided to change his medication schedule to fit better with her own schedule.
I was about as happy about that as you might imagine.
These blocks of time seem so tiny when thinking about any activity other than a seizure.
Ten seconds? Who even thinks about ten seconds passing by?
Unless you’re counting or watching the stop watch, waiting for the seizure to pass.
Three minutes? My husband can load and unload a dishwasher in that amount of time. I can put a load of clothes in the dryer and a new one in the washer. Crazy Puppy can eat his meal and our other dog’s meal in that amount of time.
It can also be a very long wait for the seizure to pass.
Seven minutes? I can get a lot done in seven minutes – make Robert’s bed in the evening and get started on play time with the dogs. Robert can eat his bowl of Rocky Road ice cream in seven minutes.
Robert had a seven minute seizure this week and it was extremely unsettling. The stop watch kept ticking away the seconds, then minutes while his head bent down and to the right at the dinner table. His hands twitched and he started smacking his lips. At the ten second mark, I expected him to come out of it and begin to eat dinner. Twenty seconds passed and I stood by him, watching. One minute went by and Richard stood on the other side of him in case he fell off his chair.
Robert continued to look to the right with his eyes closed, smacking his lips and twitching his hands.
Two minutes. Three minutes. Three and a half minutes.
The wait was excruciating.
At five minutes, I gave him an Ativan which we have on hand for just such a scenario. It wasn’t easy since it is in a pill format but somehow, he swallowed it.
Two minutes later, he started to come out of the seizure. After a few more minutes, he knew who I was and who Richard was but didn’t know where he was.
Several more minutes later, he was eating his dinner and declaring the meal excellent.
He was pretty groggy and sleepy the rest of the night but once he was in bed, I again asked how he was feeling and, of course, he answered, “Excellent.”
Seven minutes of a seizure was extremely scary and unnerving for me and my husband. Seven minutes seemed to last forever for us.
Seven minutes was not near long enough to take the excellent out of Robert.