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Two days ago, as I wrote, I had one of the strangest and most emotionally turbulent days of my life. I won’t go back over all of it here – I’m only just starting to come down from it – but yesterday was very much a “processing” day. The truth is that the emergency itself was traumatic. In those moments I genuinely feared I was having a stroke, and there was a real, cold sense that this might be the last time I was leaving home as myself – the last time life looked anything like it used to. You may know the feeling: you’re grateful and relieved at the outcome, pleased that it wasn’t a stroke or PSP accelerating… and yet the shock sits heavily in your chest. Discovering that it is Bell’s Palsy – even if far better than the alternatives – isn’t exactly comforting. This morning, three realisations landed at once…
- It was good news – relatively speaking
As I wrote in my previous post, this is “good news” in the strangest sense.
It’s a bit like being told that, in the prison you didn’t choose to enter, you’re getting an extra ration today. Technically good news – a small mercy – but it doesn’t change the fact you’re still behind the same walls, living with the same sentence.
I still have PSP, and it’s still progressing. All the freezing episodes I’ve been managing are clearly PSP. But the sudden spike in symptoms these past days seems to have been Palsy Number Two: Bell’s Palsy. Its formal name, nervus facialis, explains the “P” in the name – paralysis – but otherwise has no real connection to PSP.
Importantly, it gives me much more peace of mind about being there for my eldest daughter’s wedding, which is simply so incredibly important to me although I have made her a promise that it is her day not mine and that is the absolute priority (Still I am ‘father of the bride’ a very real dream for me).
An Aside – Three stories from hospital
First, I’m grateful I stayed conscious, calm, and aware the whole time, even while worried. I even called my neurologist’s secretary from the ambulance to ask if the neurologist could meet me in the ER – and they did. Truly wonderful people. Their presence helped settle the diagnosis quickly and definitively.
Second, an amusing AI moment. While I waited in the ER after the diagnosis, my sister/brother‑in‑law/aunt arrived to be with Gayle and me. It meant the world to have family there. But the funny part? Every one of us had suddenly become a freshly minted PhD in Bell’s Palsy thanks to AI. We all used different apps – I used Grok, my aunt used ChatGPT – so naturally we each arrived with slightly different “expert knowledge”. And of course, we all still knew absolutely nothing.
The Third Story is just one of the country I live in. Afterwards, a completely secular nurse looked at the diagnosis and went ‘Baruch Hashem’ – with Thanks to G-d. It was so funny at the time being told it reassured me. Many others repeated it.
I remain in awe at the speed they got me to my house, to hospital, took to a CT and made a diagnosis and for me discharged. It was simply unbelievable. I have paid high prices in my tax bills for free universal healthcare. Yesterday I saw the benefit. The cost 0$. Thank you to everyone involved.
- Pell’s Palsy is not a walk in the park
Bell’s Palsy on top of PSP is… not fun. Even this mild case. Half my face, from forehead to chin, simply isn’t working properly. – it isn’t paralysed or too drooped – I got away with what seems an early diagnosis and/or mild case. A mouthwash incident sums it up: on night one I tried to swish mouthwash, and it all poured out of the right side of my mouth, because it has no control. Eating, drinking, even my eyes – all of it is harder. I truly wouldn’t wish this on anyone. On its own it would be nasty, in my situation, with PSP and being retired, it feels like an extra 2% of difficulty layered on an already heavy load. Both palsies affect my eyes, which is making everything trickier.
- The time for a carer is now
My sister was a lifesaver. She was working from my house spotted the symptoms early, pushed me to get help, and got me onto steroids quickly enough to help the Bell’s Palsy. We’re interviewing a carer today – someone highly recommended. Whether it works out, we’ll see, but the paperwork is in. The concerns I had – dignity, finances, the emotional hurdle – have become far less important. I won’t pretend that it won’t be an issue, but I have accepted it and need it.
This isn’t just a strain on me; it affects the whole family. But knowing this isn’t PSP suddenly accelerating at frightening speed is the key source of relief.
What comes next? Only He above knows. I’m hoping for a period of calm. When I started this blog, I assumed I’d have plenty to write about – right now, I’d be delighted if the next few days are boring and uneventful.
