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!
Thank you. Lord knows how much effort that cost you. It is a real insight, but probably wore you out.ReplyDelete
It was OK. My recovery rate has improved since physio. I am not sure how this is going to go in the next few weeks in the absence of Avastin. It's a new ballgame yet again.Delete
Denis, I hope this is not too direct, but then you yourself always are, and I very much admire that, so thought I'd give your many followers one (of many) alternative experiences.ReplyDelete
My wife's GBM(4) was surrounding the (layman's language) visual pathway to her brain. So the doctor (who I greatly respect for his forthright manner) basically advised that she could have maybe a two month's extension of life but only with the immediate loss of vision. We (and I always feel the guilt of that word) chose the other option of removing as much of the mass as possible, but without affecting vision. And the prognosis came to pass.
But the other thing different to your present experience was her experience with seizures. There were only two - both very frightening for me as an observer (and, Lord, I don't know how Tracey has such fortitude, never mind your good self, with these constant attacks) and both of those were towards the end of the period during which my wife was 'still my wife'.
And by that I mean her 'journey' was a bit like a slow progression down a darkened hallway. Work as hard, try as hard, as I did - she simply slipped away. And then for the last month or so she was simply 'not there'. But the thing about it was that the changes were so scarcely incremental that I remember actually being surprised by a visiting nurse who gently advised me that "it won't be long now"; we'd (I had) somehow actually gotten from diagnosis to finality without much wider thought than what today or tomorrow demanded to be done?
This is depressing, I know, and I apologise. But after 30-some years of marriage I think I (we) did enough to say we (I) could have done no more. And buried back in these words is my thanks for your words, which have made the whole process (for carer and cared) much clearer. I really hope others read your blog for the information it contains. I think that is invaluable, and I thank you.
Thank you very much for sharing this with us all. It deserved a response from me much earlier. To me at least, it's not depressing. If you'll forgive my being as clinical with her as I am with myself, her case underlines my point about the uniqueness of each one. Location of the tumour is so critical.Delete
Again, being brutally clinical, her slipping away, apart from the serious seizures, seems to have been quite gentle and mercifully swift, given that there was no way she or anyone else was going to reverse the process.
You and medical science and whatever assistance anyone believes came from some divine source could do nothing to change this.
Many thanks for your willingness to share this deeply personal and painful experience once again.
It's hard to reach for more - or other words - than, thank you, Denis. And KVD. Your (pl) precise, mindful observations, and willingness to vulnerably share the most difficult experience of being human, is a gift to the lives of all of us who read this. xxReplyDelete
Tenterhooks. How tiny and subtle the seizure trigger can be. I had no idea. It leaves me wondering at how you cope with the rhythms of hospital life.ReplyDelete
"Carer" and "Cared" - first time I heard this vocabulary and I like it.
David and Ros – I can only repeat what I've said before – your insights have been invaluable to me, and I believe to Tracey as well, from the 'inside' of your own very difficult experiences as cared-for and carer.ReplyDelete
I pondered for a long time as to the order of those two. I could so easily put the carer first in all cases of illnesses such as our two different but parallel ones. I wonder every day just who of the two has drawn the short straw.