No so long ago, I was reading the final proof of my survival memoir, Stroke, before my publisher Sandstone Press sent it off to the printer. If you can’t wait till January for the – I’m reliably informed – beautiful hard copy artefact, you can get a brilliant deal and receive the e-book before Christmas here. Just tell ’em Stroke Bloke sent you, and leave a complimentary review. 😉
It’s interesting to reflect on the events of six years ago, now that our lives are in some sort of equilibrium again. Notwithstanding Stroke Bloke Jr’s efforts! And the fact that the big push for Stroke: The Book is in the offing.
[Check out the Apoplexy Newsletter for more wryness and more personal insights.]
Such reflections were particularly pertinent recently, when I went off to our local Western General Hospital to get set up for home videotelemetry and ambulatory EEG monitoring. I also got an ambulatory EEG set up after my return home from the stroke ward, and the differences are striking.
Looking back at the story of my Brooklyn EEG, I’m struck by the extent to which Mrs Stroke Bloke and I took it really easy that weekend. This was partly because we had to be careful of the weather – you’ve got to be really careful not to get the kit wet – but also because I was still very much subject to the effects of post-stroke fatigue. We spent a big chunk of the weekend watching the History Channel’s mini-series about the Hatfields & McCoys.
Six hours of it, and at the end of the story I had absolutely no idea what had just gone down. Nothing to do with my brain injury, you understand. Seriously. It made Theresa May’s rumblings through the Brexit process look fathomable. Let me be absolutely clear about that.
During my three days of EEG/telemetry monitoring here in Edinburgh, I kept pretty active. Meanwhile, I would keep a note of particular events that took place during the day: meals, sleeping, etc. It was like a more hi-tech version of my old Be Your Own Brain Experiment, er, experiment.
(Late 70s and early 80s film and TV really seems to be appealing to my Brexit-era mindset.)
The original monitoring I underwent back in Brooklyn was to see if the medical team could pick up anything that seemed to have made me more susceptible to suffering a stroke. This time, we were trying to kind out why I’ve been shaking when falling asleep and waking up since my stroke.
On the evening of Day 1, I headed off to the launch of Chris McQueer’s second collection of short stories at the Waterstones book shop in Edinburgh’s West End. Lovely lad that he is, if Chris saw the 23 wires gathered together and poking out of the back of my beanie hat as he was signing my book, he didn’t say anything.
I also was able to hop on a bus with the Wee Man and take him to Book Bug, the song session for little kids at one of our local libraries. It was a pretty normal few days. Except…
The big difference to my prior experience of ambulatory EEG was that my kit included a little video camera and tripod. When I was at home, I was to set this up in whatever room I was spending most time during any particular period. Mrs Stroke Bloke had me ask during one of my return visits to the hospital to have the data uploaded: Yes, it was also recording audio.
Yeah, I’m not joking about that 70-80s movie and telly thing. I hope Alexa didn’t hear me moaning about the monitoring setup.
The full kit cost around £20,000, I’m told. But this is kind of efficient, because there’s a huge backlog for getting folks into hospital overnight for these kind of epilepsy-adjacent monitoring exercises, and these spots are more likely to be reserved for patients who can’t handle using and setting up the home telemetry kit, for whatever reason. That has its own costs as well, of course.
(Yeah, I’m really not joking about that 70-80s movie and telly thing.)
And it’s encouraging to me that NHS Scotland is taking steps to find out what my problems are before I crash a car into a ditch and become much more of a drain on the public purse. Long-term public policy thinking? Maybe it is the seventies?
