The basis of this was scribbled tonight on the medical side of the blog, but many people don't go there or don't see what's there unless they click on an archive area. It's what happens in brief when I'm actually having a focal seizure, as I was tonight. I thought it of sufficient interest to publish a modified version here as well, just this once, because you might be the only person around when someone has a focal seizure. I reiterate, this is what happens to me, and for others may be very different, and the nature of focal seizures has changed for me over time.
This is today.
Tuesday, 6 August, 2013. 6.40 PM
Seizures are brought on now by any little change, such as new visitors of any sort, or some slightly stressful event. The effect is directly related to the type and amount of the stress.
Some chemical (adrenalin?) which changes brain activity even to a tiny extent sets them off. It's hair-trigger territory. And strangely, one of the strongest triggers is talking or writing about them. I've had to pay for this couple of sentences by the strongest seizure of the day, but I needed to explain this reaction. It's become an auto-response, which is a pain in the neck, sometimes literally, like now.
No-one is around, so I don't have to speak, but if I did try, I may not be able to. I just tried and it's not bad, but then I'm not speaking to another person. As well, the loss of control over the larynx may be delayed, especially if other factors like a new person coming in play their part.
I'm doing this for a clinical description which may help others, bearing in mind that it may be completely irrelevant to another GBM sufferer. It just may help to explain to carers of some patients what a hair-trigger their care-recipient is on, if their behaviour seems unexplainable or even looking like a pretence as if to gain sympathy. Just let them sit quietly and don't speak to them unless they want to talk. Take power away from them, and you may prolong the seizures. Don't assume control unless absolutely necessary. Be around, unless they want you to leave.
[Later addition: I've described many times in the now archived medical sections of the blog the sorts of seizures I've had previously when each one was a much bigger deal. Going from eight seizures a month to three an hour changes things! Most now are really minor while happening, though not their effects. The major ones now are much more unpleasant, involving creeping partial paralysis, throat stricture, tremors, head pain, eye fluttering and ticks of mouth, cheek and brow. The worst feeling so far is my head being forced to turn to the right as neck muscles on the right side spasm. This is the only time I really get concerned at how strong it will get, and whether it will stop.]
I'm now starting to feel the seizures settle as I know I'm coming to the end of this description. That was hard work, and slight tremors are the legacy and will be for up to an hour. At times, other portions of my body may act as if I've been startled. Like I'm jumpy. Chemically I am, but deep down only slightly, because of the approaching proteinuria test that decides whether or not I will have Avastin next Tuesday.
The combined effect of them all [I'm talking about before writing this] has been to set me back quite a bit in terms of general weakness, but in particular, weakening my right hand grip on the zimmer frame handle, which is very frustrating because I can't depend on it in the way I could even two weeks ago.
Now Sally has come in, and I'm about to have blood pressure taken. 169/77. Well above my average for the systolic [higher] reading.
I'll talk more about zimmer frames on another occasion and my previous misunderstanding of them. It's enough of medical things for now.
One last thing. The nurses coming in and out doing their tasks to and for me do not worry me. Their presence and good humour and professionalism are beautiful things to be surrounded by. It's not home and can never be but in this phase when they are needed, it is a reassuring 'second life'.
6.40 PM when I began this. It's now 8.20 PM.
And it's now 10.30 PM!